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Has Anyone Successfully Lost Weight/dieted With Pots/dysautonomia?


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In the past 4 months, I've somehow gained 25 pounds and I haven't really changed my eating or activity level. Needless to say, I'm frustrated, my pants are tight and annoying, and I want to stop it before it gets out of control.

What is bothersome is I really haven't changed much in my lifestyle. The three major changes I can think of are:

1. Going off Hormonal BC Pill to Mirena IUD

2. Starting a Beta Blocker (I read average weight gain for them is about 3-5 pounds)

3. Moving

I guess I need to start dieting/exercising which is scary with POTS on a Beta Blocker. I still have to eat salt, I have to eat enough (if I don't eat, my symptoms worsen), I have to get down fluids, etc. And with exercising, I have to start so slow.

Has anyone successfully lost weight? I can't keep creeping up. I was already about 15 pounds over what is my 'happy weight' and now it's really bad. :)

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Cat Lady, I also have struggled with my weight because of the beta blockers, inability to exercise and I think our bodies burn more calories when our hearts are beating too fast. I have a few suggestions that may help you. Although gatorade makes me feel better... it is full of sugar. I am drinking water with sea salt in it instead. ( I can't tolerate nutra sweet but I am going to check online for a sports drink that is low cal- if I find one I'll write you). Try to eat protein and cut out simple carbs. This has helped me retain some muscle even though I am not able to exercise right now. I also ALWAYS drink a full glass of water before meals and I used to take a fiber suppliment before meals ( try metamucil if you can tolerate it).

It is hard b/c I have always been thin, active and I have always been able to eat what I want. I think you are really wise to try to "nip this in the bud" b/c I have friend who have gotten so over weight that they feel helpless.

I try to think of not gaining weight instead of trying to lose weight and it takes some of the mental pressure off.

I also try not to have things in my house that I like to eat (I love gummy worms) because I will eat them. so I don't buy them. I have been known to thow sweets out also. A neighbor made us a beautiful cake. My children and I each had a piece and then I tossed it ( after writing a nice note and telling my children that they could never tell anyone b/c it would hurt her feelings).

Sometimes I will chew gum when I am bored and that keeps me from snacking. I am also trying to give myself a break if I pig out b/c I tend to be an all or nothing person and that is not helpful when you are trying to watch your weight. I know it is wasteful to thow food out but I once heard someone say "would you rather thow it in the trash can or treat your body like a trash can?" This helps me not feel guilty because I know I have too much and others dpn't have enough. Anyway I wish you well with this struggle. I know it is hard but you can do it and you will feel happier ( or less crappy depending on the day LOL) . Kay Jay

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Earlier this year I had good sucess with eating high protein and vegetable diet, cut out grains and potatoes. My body seems to see bread or pasta and put on pounds instantly. Whilst I followed that eating plan I not only halted my relentless weight gain but managed to loose about 6 pounds too. Unfortunately I have had a lot of stress recently and have been pigging out on pizza and chocolate so not I am back to square one but I know how to go about it now without feeling hungry (I can't cope on a low calorie diet).

Flop

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Yes, I have lost 20+ lbs the two times I was on Weight Watchers... slowly, safely, and pretty happily, I might add. I was under 40 at each time, and honestly, did not really exercise as part of my weight loss program; probably would have lost more quickly if I did. Now that I'm over 40 years old, it's much harder, but still not impossible--even if some days it feels impossible.

Nina

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My formula is to cut out foods with sugar and high fat. No dessert cakes, cookies or candy. After about 2 weeks of withdrawal, my body finds other substitutes for the cravings, like fruit, or berries or corn chips with melted cheese.

You can do it. Also, make sure your thyroid isn't in need of a boost in hormone. The doctor can test for this.

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Cat Lady,

I've been quite thin all of my life, then all of this dysautonomia/MCAD stuff got really severe for me in 2003. Somehow between then and now, I slowly put on almost 15-20 lbs. I had the same problems you are describing. It's like that extra fat hormonally controlled my appetite. I had constant low blood sugar and all of my symptoms felt so much better right after I ate.

I tried everything. I ate sensibly and exercised moderately. I'm 47; my weight didn't budge. I recently took a huge leap of faith and joined a local exercise "bootcamp" for women. We meet 3 times a week for an hour. Their premise is that you only compete with yourself and move at your own pace. Not only was I afraid of the tachy, but also of developing anaphylaxis. I revealed my health issues to my trainer. She carries an epi-pen for me and I drink 10 times more than anyone else in class, BUT it pushes me W-A-Y beyond my comfort zone. I found that I felt better after I exercised. My hunger disapated dramatically. My only awful symptom was extreme flushing which can precede an attack for me. The flushing is pretty constant, but doesn't progress into much else. I started with a 13-14 min. mile and am now working on an 8 minute mile. We also do lots of calisthenics, light weights, etc. I lost 13 lbs and over 8 inches in my first month. My BMI is 20.5, but my body fat is still a little high. I've signed up for another month and am considering keeping this up year round so I can enjoy the holidays without watching what I eat so closely. I've found other women in my class who also have really high HR's. I can read it on their monitors. We sweat grunt, and cheerfully complain together. The comraderie is wonderful and I'm discovering a competitive athletic part of myself that I thought was lost.

For a few weeks, I also participated in a meal program called Good Measure Meals. (Ruby uses it on the TV show:-) It's really healthy food, freshly prepared (not frozen), and it measures out to 1,200 calories a day. I'm no longer using it, but won't hesitate as I need it. It helped me re-think my portions. I never felt hungry. I ate an apple if i had trouble till the next meal. I am actually able to eat even more now as I am more muscular (as opposed to fat) and muscle burns calories even when I'm not moving.

I realize that I am blessed to be well enough on my med regimen to participate. I wake up happier and have more energy that I did when I was heavier. I also realize that many here are not well enough to participate in such a vigorous program. I didn't think I was either. It took tremendous courage to try. I am still working to overcome my catastrophisizing. I always imagine that I'm going to faint or otherwise embarass myself in some horrific way in class. So far so good. This illness has taken so much away from me. Little by little, I am trying to re-claim my life.

Best of luck to you in your journey.

Julie

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I've lost 11 pounds this summer by cutting out the bad carbs. I eat a lot of lean protein, veggies, salads, beans, and whole fruits. I'm not able to exercise. This is the first time in years I've been able to lose some weight. When I started taking Coreg and Diltiazem, I gained 10 pounds quickly, then 5 more. I counted calories for years without losing anything. I've got more to go, but it's nice to finally have a little success. Now if I can just keep those pounds off!

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You are all giving me hope! I am so unhappy barely squeezing in my clothing (and I both refuse and don't have the funds to buy new ones!).

Kayjay: One of the changes in the past 3 months are the Beta Blockers. I read they can make people gain, on average, about five pounds. But not 25! I wonder if our heart rates pre-Beta Blocker were causing more calories to be burned? That could be the 20 pound difference here, if so. Does anyone know about this connection?

Flop: I've been trying to cut down on my Carbs. I do love my Carbs though. And I don't eat mammals and can't eat nuts (Cashew reaction once has me scared of them!). I bought some SoyNut in place of peanut butter, but need to find more protein. I think I need to get a pan I can Sautee chicken with Olive Oil. I also know I NEED to cut down those Carbs and just have an occasional treat.

FutureHope: Since I've held a stable weight for 3+ years then boom, 20-25 pounds in 3 months my doctor is running thyroid tests. He's my new doctor. He doesn't have all my records yet so I have to tell him my weight was very steady (it was, I monitored it because there's a point I never wanted to go over and now have!).

Mack's Mom: My doctor is saying I need to exercise, be it for weight loss, general health, or an improvement of POTS. He just feels it's important and wants me to try. To his credit, he suggested swimming because of the POTS. But before I sign up with anything I want to get back into things gradually. I've been reluctant. I'm scared. The Beta Blocker - I can't monitor my HR well (but he says many people exercise on BBs). I'm scared my POTS will get worse, but then I hear these stories where it HELPS. So I have to at least start walking and using my dumb bells and sit ups and go from there. I will chat with my Doctor Thursday but you, as well as I, know we have weird issues so it's a leap of faith to do something!

Do you get exercise anaphylaxis? From what I understand, that one is VERY rare. I feel for you. I too get flushing from heat and exercising, but I'm pale and I think I always have done that. Is your flushing painful/hive like?

My biggest concern, I think, is exercise induced asthma I used to get. I'm on Beta Blockers now...so hopefully that won't come back in full force.

Sam76: Beans! Those are a good protein. I'll need to incorporate beans! Glad this diet is working for you.

I'll report back on what my thyroid tests were and what my Doctor says about my starting exercise plan. I have to do it even though I want to throw up thinking about it! But if it works, like Mack's Mom says, I'll be reclaiming my life.

I did Google Mirena and a lot of women say they have weight gain...but it's supposed to be localized hormone and shouldn't cause excessive weight gain. I hope it's not it because it works so well I don't want to take it out yet!

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Here's my bag-of-tricks from which you might pick and choose a few that suit you:

Glycemic Index concepts (slow-carbs, carb/protein blending) worth learning about but not a silver bullet. "Frequent small meals" approach is wise, energy-sustaining, weight-loss & diabetic friendly and helpful for POTS (minimizing post-parandial circulation effect). Low-fat is challenging but well worth the effort (it's tough if you love butter more than sweets, as I do). Supplement with some flax & fish oils to facilitate "good fat" utilization (some are said to help burn stored fats, too). If you lower calories significantly, throw in a multi-vitamin to cover yourself.

I methodically tried various supplements and few showed promise for me. None were of "stimulant" variety... except mildly so with Claritin-D... from which I get mild "flutter" at times. Use extreme caution with anything in that realm, based on your known sensitivities, medication and doctor's advice (probably just skip those things, like I did). A fat-binder like orlistat is rather benign (correct for nutrient absorption issues, though) but it's not pretty if you exceed the allowed intakes! Seemed like it could safely help a bit, but I didn't bother.

Caution: High-protein is problematic for dehydration. If you dehydrate & exacerbate POTS & impede your stamina more than your (our) existing challenging situation... what have you gained? If you insist on this technique or find it effective, probably stick to a moderate target like the "Zone" (40:30:30 Carb:Fat:Prot ratios) and keep water intake very steady (wary of ketosis if pushing things). Don't do it for long, and re-introduce carbs in slow, controlled taper afterward (to avoid rebound effect that bites most people). Better yet, if doing low-carb or super-low-calories, follow a cycle 3-4 "on" days with 2 "off" days ("off" doesn't mean splurge!). This allows long-term application of what are short-term & problematic techniques. Low-carb is like mild starvation... when the body starves, it holds on to food/fat, defeats your effort and zaps your energy. Be cautious and work around or avoid this. As an easy fix, if you're disciplined enough to do low-carb... just do "good carbs" instead... fibrous stuff, basically. It's smarter than too much fat or protein.

Anyway, I lost 80+ lbs and self-taught proper nutrition by tracking everything I ate (calorieking.com, or similar) and reading everything I could. Top recommendation is Tom Venuto's work (no you don't have to be a bodybuilder, bodymodel or athlete... but it's fun to pretend). I ramped exercise from 0 during an injured/rehab state, slowly up to 1000 cal/day avg. (until my POTSish fatigue dictated "you shall be totally stagnant again"). Be leery of "overtraining" and pace yourself, especially due to the POTS sensitivities and proclivity for fatigue.

My best period of weight loss coincided with steady significant exercise fed with very high-carbs, minimal-fat and modest steady protein (amid healthy flow of H2O)... the old-fashioned sound heart-healthy diet. So long as I burnt more calories than I ate, I lost weight! But you see, I actually knew my net calories... and the nutritional content of every food I ate (within reason). By logging food I was able to wing-it freely, yet apply sound targets with no hard restrictions or strict plans. Self-discipline amid a free system (very libertarian, eh :)

Also key: From behavioral science... logging food disrupts habitual patterns and affords their replacement with sound "conscious" control and new habits. Like a sustained "intervention" and retraining! If you can build an approach that you are able to live within and slowly improve over time, the challenges become less painful and more rewarding... then you grow "healthy impulses"... well, at least more than before. :)

As a caveat, significant weight loss such as mine contributes to vascular denervation, hence POTS aggravation, but one just has to deal with that... hopefully it's temporary, not sure.

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I think that Eric's approach is very similar to mine, and that he has some very good ideas. I try to stick to a low-fat diet, and watch my sugars. No fried or snack foods. I also eat along the moderate lines of the "zone", the 40:30:30 Carb:Fat:Protein ratio in my diet.

The only time I have gained weight was from medication, and it's certainly annoying. I usually gain weight when trying to switch birth control pills.

I know you can lose the weight, and any exercise you can get in will certainly help, especially walking if you're able. Exercises from your chair/bed also help!

Good luck. I know you can do it!

Let us know how you progress :(

Jana

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My body seems to establish "set points" and it is VERY difficult for me to change them. At times I drop weight without altering my diet and at other times, I put on pounds weekly with no change in the calories I consume.

I also have hashimoto thyroid ... which is likely behind my struggles with both end of the weight continuim. If you get your TSH tested at the Doctor's office, you might want to ask about getting tested for thyroid antibodies too.

You mentioned protien sources ... I am a vegetarian and always mindful of my protien intake. Lentils, eggs, cheese, tofu and a variety of homemade nutbutters (almonds, hazelnut, brazil nut) help me balance my whole grain carbs which I also vary to include amaranth, whole grain spelt, barley, brown rice, etc.

I am currently in one of my "curb my weight gain" modes since I am starting to creep higher and higher without my approval ;-) So I am becoming creative in my cooking once again. I recently began developing a line of recipes for dessert cakes using canned beans. My most recent creation is a banana cake with tofu frosting that boasts really high protien, good fiber and very low sugar. I'm posting my new indulgences on the web at this site:

http://30dayvegetarian.com/forum/

Careful to read the ingredients -- some like the chocolate cake are low sugar but NOT low fat. While others like the banana dream is so balanced you could eat it for breakfast! ;-) I'm not a dietician, so ofcourse check with your Doctor on what diet plan works for you. I just really enjoy food and creating new ways to feel good about eating with dietary restrictions.

Good luck finding good eats that help you feel good!

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Since bb's I am back to my normal weight!! I had lost 10 lbs...and was grossly underweight at 97 lbs!!

BUT I do think diet is so important. I like what was said about high protein low carb diet!! Even with th glutton..or without it!! The only real drw back here is that we feel well enough to cook!!

I personally stuggle to be interested in food these days. I don't feel well so much of the time.

Anyway...good luck.

Erika

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Ditto to Erik's idea of the food journal!!! I forgot to mention that- I find it really helpful. Write down EVERY bite (even the tiniest taste) that you eat. It will definately help you to become more a more conscious food consumer.

To answer your question re. exercise anaphylaxis. I had it once way back in 2003. I had several anaphylactic episodes that year and what I describe as "l constant low grade anaphylaxis" for several years afterwards. Treating my MCAD as been very helpful in allowing me to exercise with such great intensity. It's still scary, but the more I do (not overdo!) the stronger, more confident, and healthier I feel. I still take all of my meds daily, mostly as a preventative measure. Both of my allergists think I will have to for the rest of my life.

I know you can do it, Cat Lady. I'm cheering for you. Keep us posted on your progress.

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Yes - I lost weight through diet and exercise a couple of times. Since POTS limits my ability to exercise, I found that the diet part was the most important. I think the trick is not to go on a diet, but to change your eating habits in a way that works. Find things that you like that are low in calories and don't keep junk food around. And allow yourself to cheat once in a while and eat the the things you love. Otherwise you will go crazy!

I didn't read through any of the replies, so sorry if this is redundant. You mentioned you recently went off birth control. I just posted about this the other day. I went off mine and have gained weight. Apparently this is a side effect, so may be part of your issue. That part may sort itself out when your hormones settle down.

Good luck - keep us posted.

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Way back when I was on beta blockers, I increased my exercise dramatically, but still gained an amazing amount of weight. Like over 30 lbs in 4 months. At the time, it wasn't too awful because I had lost so much previously that it just put me in a heavy normal area, but beta blockers can have a strong impact on weight in my experience. I did gain back a ton of muscle that had wasted, so it was a trade off. I road biked 10-20 miles a day when I could finally exercise again! I tend to overdo when I exercise, so be careful of trying so hard you end up injured, like eric said. I am about to start a low fat, low sodium diet makeover myself to try to rein in some of my steroid weight gain. That is the killer for me. Any time I am on them for more than a week, it is like 10 lbs instantly regardless of food or activity level. My blood sugars also go crazy, so that doesn't help. The journal idea is also great! I do it for money and have in teh past to remind myself of all those little forgotten things I've eaten. It does help.

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As a recovering anorexic, the 30 pound weight gain I have had since the onset of my pots symptoms has probably been the hardest symptom for me to take. I could handle being thin, but relatively healthy 120, being 150 makes me crazy! I have not yet come up with a good solution, as my tolerance for exercise is minimal at this point. After a couple of longer hospitalizations in may and june, I have also lost so much body strength that exercise can be very depressing. But I will see if any of the great suggestions here can get me off my rump! Several of my docs have suggested yoga as something that may be easier to tackle, anyone here tried it?

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I've tried some yoga. Just be careful with any pose that puts you upside down! I can't stand on my head or anything, but standing too long or bending over too long make me pretty sick. If you can find stuff that's mostly on the mat, it's pretty nice. Pilates is good, too.

Meg

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I've tried some yoga. Just be careful with any pose that puts you upside down! I can't stand on my head or anything, but standing too long or bending over too long make me pretty sick. If you can find stuff that's mostly on the mat, it's pretty nice. Pilates is good, too.

Meg

Thanks for the tips! I will let you know how it goes!

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