Weight Control

[acesew]

I have another question.  Do any of you have trouble with gaining weight or not being able to lose it.  I have gained about 15 lbs in the past 6 months and can't seem to lose but a few lbs and then put it back on.  I don't eat very much during the day.  Most of the time I will skip supper or only eat a very little bit.  I eat a small breakfast and a medium lunch.  The drs put me on lyrica for a while and that probably contributed to the weight, but I am off of it now.  I walk a lot during the day and try to do some other mild exercise, but can't handle alot.  I am soooooo wore out by the time I get off work.

Any suggestions?  I know there are several people here who can't seem to put weight on.  I stay sick to my stomach a lot, also.  I would think that would make me lose weight.  I don't know.  I am starting to get very concerned about it.
That is probably one of the last things for me to be "worried" about, but I have a fear of being overweight like my mother and sister.  I want to be as healthy as I can at the time.

Thanks y'all for your support.

[Heiferly]

If you haven't seen an endocrinologist yet, you may want to try that route to make sure you don't have any glucose or thyroid problems going on that are affecting your metabolism.  

If you're not happy with the follow-up you've had since your tilt, obtain the full results from your tilt (not just the report, but the actual tracings and your entire chart from whatever else they may have done that day or other related tests you've had--if you work in the field, I presume you know the difference between discharge summaries/test reports and actual charts).  Take all that and find another doctor with more expertise in dysautonomia; generally speaking, people have better luck with cardiologists or neurologists at major teaching hospitals.  

I don't know a ton about dysautonomia docs and hospitals in Australia (that's where your profile says you are, yes?), but here's a little:

Baker Medical Research Institute (M.D.E.), Victoria, Australia:  known for research (esp. collaborating with top researchers in the US and elsewhere) on dysautonomia,  including chronic orthostatic intolerance syndromes such as neurocardiogenic syncope and POTS.

Dr. Mark Thieben is now with the Nepean Hospital, Sydney West Area Health Service, Penrith, NSW, Australia; he formerly worked on a major study of POTS for one of the US's top hospital's dysautonomia clinics at Mayo Clinic.

Department of Cardiology,Royal Brisbane Hospital, Brisbane, Australia:  Drs. G Scalia & M PFrenneaux published on exercise-induced NM syncope (and possibly other topics--I'm just grabbing these as rapidly as I can going after the most promising leads).

Well, quite honestly, not knowing the geography of Australia *at all* (sorry), I may be better off leaving it at that for now.  Let me know if you want me to keep looking with a specific area in mind to narrow down the search, or depending on how adept you are with computers, you can try this on your own if you wish:

Google Scholar with search terms      Australia neurally mediated hypotension:

http://scholar.google.com/scholar?hl=en&q=australia+neurally+mediated+hypotension&btnG=Search&as_sdt=2000&as_ylo=&as_vis=0

If you try it, I suggest toying with the search terms a bit to see if you get better results with slightly different search terms.  But if you want me to take another shot at it, just let me know.  Sending me a direct message is probably best at this point because I've been rather ill and it's been hit/miss (mostly miss) catching me here on the forum.  (Hover over my username, then click on "send message" in the box that pops up to send a private message over MedHelp.)

Good luck finding a more helpful doctor!!

[WhoTookKateyKins]

I have always understood that an 'average' sized woman should eat 1500 calories a day and an 'average' sized man should eat 2000. If either are more than moderately active, calories should/may need to increase to maintain a steady and ultimately healthy body weight.
So at only 500-1000 calories if you are even moderately active you should be dropping weight fast. 3000 calories under/over your daily normal limits (as above) is all it takes to lose/gain 1 pound/approx 0.8(ish) kgs of body weight (this assumes the somewhat wide range of what is considered 'normal' metabolic processes)  if you are under-eating by 1/3 to 2/3 of your required calories every day I would expect you to lose between 1 to 2 pounds (up to 1 kg) every week.
That is ideal if you're on a diet and trying to lose weight but is a real problem though if you are not, you will become under nourished quite quickly.
I'd be stopping that and considering what else may be going on, or at least determine what your baseline calorific requirement is. I'd go with the BMI scale for a decision to determine if you are a small, average or large person of your gender. I believe the range of weight they say a person of a certain height SHOULD be under the BMI, covers about 12 kg and I think this is to cover small to large frame/skeletal size and both genders. If you use a BMI scale specifically for your gender than small frame should be at the lower end of this 12kg range and the large framed people should aim for the top of this weight range)
Personally I aim for 2.500 calories per day as I struggle to hold onto weight I'm far too thin.but nutritionally I am still fine eating less I just don't like the way I look. Being underweight has never negatively impacted my health except a) I am the one person who does NOT float, I sink like an anchor LOL and b) I feel both the cold and the heat and don't like either, I prefer moderate temperatures. Apart from that I feel good as an obviously scrawny looking female, but I hate that people probably assume I am either anorexic or a drug addict of some sort, heck I don't even drink! Best of luck to you.

[dysautonomic]

Thank you so much for your reply.
I live in north Tasmaina - which is the little island off the south east coast of Australia :)
There are only 500,000 people living in Tasmania - and I am in a rural area. Unfortunately, medical services in rural areas here are quite limited.

There was only one Neurologist servicing the entire north of Tasmania (250,000 population) and I went to see him once - but sadly, he died in an accident shortly after my first appointment with him - and there are no other neurologists available in the north.

There is only one cardiologist in the north - and he was the one who performed my tilt table test. I haven't gone back to him for a while - he suggested I was "imagining" the symptoms (despite having been present when I fainted on the tilt-table) and that my dysautonomia symptoms are due to being an unmarried female with too much time on my hands! The only treatment he prescribed was anti-depressants!

Hence I am not comfortable continuing care with him.

I havent been to an endocrinologist yet - again, there is only one in the north, and a waiting list of 6 months. I am still trying to get in to see her.

I am considering travelling to the mainland of Australia to get help - and the details you have provided are a great help! The Baker Medical Research Institute would probably be the closest - so I will try that option first.

Working in the field I can get hold of my entire record - having already looked it up, there is only the original referal letter, the letter from the Cardiologist and an ECG tape showing the results during the tilt-table test. I'm going to copy all of this to take with me to my GP and try to get a referral to Baker Research Institute.

Thank you so much for your help.

[phanchaztik]

Im so sorry you have been going through. I wonder.... what your bp was in all positions, and pulse? Passing out isnt criteria for diagnosing POTS... so maybe we can trouble shoot this if you have numbers... as far as doctors go, at first... i was told anxiety... i said, ok i will be objective... maybe this is what anxiety feels like, then i hit my high.. 210/168 pulse 180.... i went to the er. I was sweating, pale, nauseated. They lay me in the bed start an iv. Flat my bp dropped to 80/60 pulse 48... the er doc said... i want you to sit up for me : bp 138/92 pulse 128.. now stand slowly : bp 188/128 pulse 170 "lay back down, im admitting you" i got all the tests. Turns out i get to be special and have sub type hyperadrenergic pots. From best they know... triggered from a tumor that was removed in my temporal lobe. This caused central nervous neropathy and TADA... i get to figure out how to make life keep happening. The only medication that truly helps, makes me feel intoxicated so i cant take the medicine until im home from work. So... other than a weekly iv solution i try to move about as much as i can to try to keep my weight down... but once my bp gets above 150 im tapped out. If you learn anything in your journeys, share share share.

[Dianna64]

You poor thing. I am so disgusted to hear the way that doctor was so disrespectful to you. My sister is an attorney and I am a nurse and you have patient rights! He can be disbarred or seriously fined for his inappropriate behavior.  Especially to prescribe anot anti depressant medication even after you had a positive tilt table result. Make sure another nurse or family or friend goes with you to all appointments at any MD from now on. It is your patient right to have someone with you as support especially if he is male and you female. Yikes! Please stick up for yourself and others. You know, if he is doing this to you, I bet there could be hundreds of others that he does this female sexual harassment making inappropriate comments to other women  patients. Especially if he knows good and well that he is one of only a few or a couple doctors in your area. Shameful. You could have a class action lawsuit against his malpractice policy and the clinic or hospital he works for. Just put a bug in a reporters ear. They will check with other patient's. Better yet report him to the bar and they have have to investigate and will do so in confidence. They can check with other women patients.

[dysautonomic]

I've had problems with passing out, palpitations for no reason (wake from deep sleep with racing heart), extreame fatigue for about 20 years, and wheat allergy diagnosed 10 years ago.
Recently had a tilt table test which I had a "strong reaction" to...only lasted 15 minutes before I passed out. Dr told me I had a "minor fainting episode". I didn't trust this doctors response, as it left me feeling very nauseous, dizzy and could not talk for 10 minutes! As I work in the medical field I was actually able to access my own medical notes and found out my heart had actually stopped for 16 seconds! I would NOT call that a minor fainting episode! Doctor mentioned NMS, and when I enquired about dysautonomia, he rolled his eyes saying "Nurses!" - I'm not a nurse, but do work in medical area and have been trying to find out what is wrong for years - arrogant doctors are the major hurdle...

His main advice as to how to help control the problem...loose weight and get a husband!!! AUGHH - arrogant and sexist!

Problem is I do have a lot of difficulty loosing weight. I just do not have any energy. I swim 3 times a week and walk everywhere (as I can't drive) - but can't go to gym or do cardio exercise as I pass out easily. I eat less than 500 calories a day, but still don't loose weight.

When I was really sick, I stopped eating all together for 2 weeks - and didn't loose any weight at all.

Anyone got any helpful hints how to get the metabolism moving without cardio exercise?

[susieqdou]

I have gained 70 pounds in 3 years.  30 of those I gained in one month.  My weight stays the same - no matter what I do.
My concern for those eating so little is that your body needs certain nutrients to heal. You are ill and need a healthy diet to get better.
I am miserable with my weight.  But I want to get well more than anything.

[acesew]

You know with everything I do in a day, I figure I am fairly active especially considering this POTS or whatever part of dyso I have.  But, I had a doctor tell me the other day that I need to exercise more.  I wanted to scream.  I looked at her and told her I most likely walk more  in one day than she does in 2-3 days, not to mention the other physical activity (carring feed and hay) that I try to make myself do as much as I can handle it.

Karen, I know how you feel.  Up until about 1-1/2 years ago, I weighed about 130-135 and I am 5'5".  So in my mind, I can't believe I have gained all of this.  But again, like you,  I am just happy I am not overweight and it isn't an issue with my health.

Thanks guys

[karinosa]

I think that what Heiferly eats all day is what I eat for one meal and more!  

I'm also quite vertically challenged in more ways than one!  I'm 5'2" and I cannot loose any weight, I eath what I think would be considered healthy, try to exercise but even when I was fully working out I never lost any weight, I used to be a size 5 and now I'm size 10-12, I just keep atributing it to having had 3 babies in 2 years (second pregnancy twins) but now that I see that there are others having the same issue I guess it is yet another P.O.T.S gift to me!  great!

I'm happy though, would be nice if I was thiner but as long as I don't become where my weight is an issue to my health then... hey I'm alive and that's what matters more : D

Karin

[AireScottie]

If you're not continuing to gain, I wouldn't worry too much.  It's important to remember that none of us here are normal, healthy people, though.  Metabolism is regulated in part by the autonomic nervous system.  The autonomic nerves signal glands that control your metabolism to secrete their chemicals.  It's understandable that your metabolism would change, and in severe cases, the caloric intake would drop below 1000, or even shoot way up.

If you're still hauling bales and 50 lb sacks of feed regularly, then leg lifts and things of that nature aren't going to help much, because your regular exercise routine already burns so much more than that.  If you get to the point when you're no longer slinging feed, then you need to come up with something to replace it.

[acesew]

Thanks for the advice.  It is hard for me to cut calories alot any way.  I am so busy and eat in town alot.....I have asked my doctor, but he don't think I am in danger of gaining too much right now.  He says I look healthy and fine.  I try to do some exercising at home when I have the energy to do it (sometimes I can't hardly move).  I have began losing some weight.  I think I have lost around 5 lbs.  I am mmore worried about putting more and more weight on than losing what I have. Alot of the medicines they have put me on have weight gain as a side effect.  I guess I am just trying to prevent that from happening.  Thanks again and I love almonds.

[Alienraver]

I agree that cutting calories lower than 1000 for an average healthy adult can be dangerous. When you eat few calories your body begins to store more fat since it doesn't know when it will see more calories (fuel). IF you have trouble exercising because you pass out, you might try doing workouts at home where your family can watch you. Low impact things like leg lifts while laying down, stretching or pressing your knees to your chest while laying down can be effective in maintaining your weight if you eat healthy. I do these things daily and feel an elevated heart rate for the duration, I am laying down so I don't feel afraid of fainting. Nuts are also a good source of calories in a low volume, that is a great idea. Almonds are great for your heart! Ask your doctor what he recommends you can try.

[acesew]

Thanks.  I knew about the "survival" mode thing, but at times I just can't eat.  I try to make myself eat at least a small amount at every meal.  
I will try this nut thing.  That may be easier than going on a diet similar to Heiferly's.

[LivingInHope]

You might have the doctor check your thyroid, to make sure it hasn't gone hypo on you.  Also, skipping meals actually puts your body into "survival" mode (learned this  way back in nursing school), causing your metabolism to slow down and can actually make you gain weight.  You might try eating a small number of nuts before eating your meal, as this can help to cut down on your appetite, I've heard.  I've tried it and I think it may work to some extent oftentimes with the crushed macadamias I eat.

[Heiferly]

Well, I might be the wrong person to ask for dietary advice then.  I stopped eating red meat over 20 years ago.  :-p  I eat all the texturized vegetable protein and soy "fake meat" stuff, which I think is denser in protein and less dense in calories and fat than real meat, but that's been my eating habits since LONG before I got sick.  I did have to cut out the breaded stuff like the "chicken" nuggets and go with the unbreaded patties; I generally stick with only high-fiber carbs whenever possible and keep carbs to a low proportion of my calorie intake.  

I guess easiest would be to tell you what I eat in a day.  Yesterday I had a FiberOne yogurt for breakfast, an unbreaded fake chicken patty and 2/3 c. steamed edamame (soybeans)--both doused in salt--for lunch, and V8 squash soup with brown rice--lots more salt--for dinner

Breakfast= 50 cal., 0 g fat, 5 g fiber
http://www.fiberone.com/Product/yogurts.aspx?key=keylime

Lunch= 80+120=200 cal., 3+5=8 g fat, 5+3=8 g fiber
http://www.morningstarfarms.com/images/ServeImage.aspx?BID=59369&MD5=143302c7e7a56777f612bc2e1c3ffdff
http://caloriecount.about.com/calories-cascadian-farm-shelled-edamame-i88836

Dinner= 140+150=290 cal., 2+1=3 g fat, 3+2=5 g fiber
http://www.campbellsv8soup.com/GoldenButternutSquash.aspx
http://www.thedailyplate.com/nutrition-calories/food/kroger/boil-in-bag-brown-rice

(3-4 L of Powerade Zero/Crystal Light does not alter calorie count)

Day Total= 540 calories, 11 g fat, 18 g fiber


My typical foods include low-cal/low-fat cheese and yogurt, fruit smoothies, fake meat, fresh and frozen veggies, veggie broth/soups, couscous or brown rice in moderation, high-fiber tortillas in lieu of bread (i.e. wraps rather than sandwiches when possible to cut calories), dried fruit/nuts to top salads (in lieu of salad dressing), high-fiber oatmeal (quaker makes it--only comes in individual packets unfortunately), decaf coffee, crystal light, powerade zero, and the miniature individually wrapped 3 musketeers bars (not even the snack size, the *really* mini ones).  I use mustard over catsup because catsup has sugar and, thus, adds unnecessary calories.  I use lemon or lime juice and pepper to flavor steamed veggies rather than melting cheese over them to cut calories there.  I never use salad dressing.  I like the Hungry Girl website/cookbooks because she has some good ideas on substitutions when you feel like eating like a "Fat Kid" ... because sometimes we all do.  :-D  I've done Weight Watchers successfully in the past and use a lot of the things I learned from that to dictate how I grocery shop even though I no longer consider myself on WW, so I guess that helps.  

[acesew]

This sounds like something I need to do.  How do you plan your meals and things?  We eat a lot of steaks and ground meat here.  We live on a farm and butcher our own calves for meat.  It is hard to eat somedays on something you know you don't need when you cook for others.  Thanks

[Heiferly]

I have to restrict my daily calorie intake to an almost laughably low level to keep my weight maintained.  I've had bouts of weight gain since having dysautonomia, always seeming to be associated with meds, but it comes on VERY easy and getting it off is another story.  And it seems that at this point my body only requires 500-1000 calories a day to stay at a steady weight, with most days erring on the side of 500; I can afford a couple 1000 calorie day "splurges" a week for eating out but the other 5 days of the week I really do eat about 500 a day.  I'm only 5'3" and this keeps me below 130 and at a size S where my clothes fit.  

I'm hoping the added activity from cardiac rehab will help.  Before this, I haven't really been able to exercise much.

[acesew]

I have noticed that mine hasn't gone up lately either.  I mean it will increase by a couple of pounds every now and then, but that can be from retaining fluids.  I will lose those couple by the next day.  
I am currently at 150 lbs and am 5'5" tall.  I have thought about going to a dietician and just don't know if that will help.  I guess that is why I am asking for the advice.  
At least I know now that it is not unusual.

Thanks

[AireScottie]

Yes, I put on a lot of weight.  Some probably due to being on Florinef, but even when I was only passing out occassionally, and still more active than the average person, all of a sudden I had to cut my calorie intake at least in half to keep from gaining.  Now that I've cut back on activity to keep from passing out, it has only gotten worse.  My body seems to have picked a certain weight and it won't budge from there no matter what I eat.  I've been to dieticians and physical therapy, and yet the weight stays where it is.  Strangely, if I eat more than normal for a week, it doesn't go up either...

[evo123]

Since my 'crash' I have lost about 28lbs, most of that was for the first 2 months when I was severely ill.  Whether being a newly diagnosed coeliac has anything to do with this I am unsure.  Before, I did find it hard to loose weight, it just wouldn't come off  and now my weight is stable.  But I have found that even on a week when I do eat some junk I still stay the same weight.  I have fluctuations around my monthly cycle but I think this is normal.