Eating/hypos/weight Gain - The Ever Expanding Blob - Yuk!

[Mikey69]

Hi all,

Ok, i'm sure the answer to this will be yes, because Dysautonomia seemingly plays havoc everywhere in the body, but i just thought i'd check

I began to experience apparent Hypos some 10 months ago. I should mention that beore this i never had any issues with eating/blood sugar - except very severe IBS type symptoms. In fact, i could miss meals, as long as I ate small snacks, or i made up for it later the same day.

I was on a sensible weight loss regime - eating very healthily, exercising when i was able, having small daily calorie deficits, etc. The weightloss was slow and gradual - and i went from 13.5 stones - 11.8 stones. Needless to say i was a very happy bunny!

Then the hypos started - as did my need to eat more frequently = me not as happy

I am pleased to announce that changing how i eat has made a huge difference. I haven't had a 'full on' hypo for months now - needless to say i'm really happy about this.

I now eat three smaller meals a day, and 2 - 3 in-between snacks as required. I typically eat breakfast around 9:30am, a snack around 12pm, lunch around 1pm, snack around 3pm, dinner around 6pm, snack around 9pm. There is some variation 30 mins either side.

Whilst this has stopped the awful severe hypos (i would be on the floor very frequently) i'm still having problems. I have been slowly putting weight on, despite being very careful and there seems to be little i can do about it.I want to be able to look down and still see my big size 12 feet!

Problem is that i need to eat less and move more, but i can't do that at the moment because of how ill i am. I've reduced meal calories and replaced some faster release foods with slow release foods and I find i still need to eat every 2 - 3 hours. If i do miss out on a snack I find that i quickly become moderately symptomatic with typical hypo head/consciousness symptoms some time betwen the 'missed snack' and the next meal time. This is at best. At worst, i simply cannot miss a snack if i want to avoid having a hypo.

Basically, I can't train like i used to, so i'm relying on walking nearly every night for 30 mins - 1 hour, and doing as much activity as i can around my home. I'm trying really, really hard to control my food intake, both what and when I eat, and i 'm finding i'm having to overeat by some 300 calories in order to prevent hypos, hence the unwanted gradual weight gain. I hate the fact that i'm having to over eat.

I want my 6 pack back!

Has anyone encountered this problem? I'm finding it all very frustrating!

Oh, i should mention that i have been a fitness freak my whole life and an very au fait with diet, lifestyle, physical activity, etc.

Thank you!

Mike

[Faye]

Pre- all this POTS... I use to do 5 miles a day and then some days do weights, or yoga....none of this is happening now...but I have been doing 6 small meals for decades due to low blood sugar....I have always been weight/ health aware...but since getting sick, and starting Beta blocker, find the pounds are growing and not lowering....just stared to try some floor exercise and tiny walks....hoping this helps....food wise my diet has pretty much remained the same...so trying to understand the weight gain...my thyroid is 'ok', other hormones 'ok'.... I understand the intake outtake process...but someone still struggling with the pants not fitting...read could be due to beta blocker;( but it does help with HR in general and brain fog....maybe I just need to work up to 'moving more' loved to hear if there is a different approach.....or any secret... I am sure not doing a low sodium diet adds as well....

[m@t]

Mike! I am in exactly the same boat. If I cut my calories I become extremely symptomatic.

Just before mine started I could under eat and drop weight off and feel pretty good. No problem rattling off 100km cycle rides and 5km runs were a breeze.

I used a bloof glucose monitor and it would appear the hyposfeelings aren't related to my actual blood sugar as that always checks out fine.

I just want to get back to hitting the gym and trails, not that I had a six pack like you did, just a similar sized pair of size 13 clown feet!

I'm all ears if you find a solution as my weight is creeping up at the moment too.

[corina]

Due to blood sugar fluctuations (both lows (hypo's) and highs) I had to start a low carb diet last year. It leveled out the fluctuations and made me loose about 13 kilo's (which is too much for me). Though I'm doing better re blood sugars I had to adjust my exercize program. I can no longer swim nor do any core exercizes as they set off hypo's. Unfortunately I can't feel them coming so there's nothing I can do to avert them which makes it quite scary (I've had hypo's in the gym, while driving etc) so I'd rather make sure not to get them at all. I'll be seeing an endocrinologist to try figure out if there's something that can be done as I'm still loosing wait. Sorry you all are struggling with this too!

[Guest ANCY]

Have you considered the side effects of any drugs you are on?

Due to my gastroperisis my calorie intake up until last year was very sporadic due to an inability to hold things down. There was a point where I was only able to get 300 calories in a day for a couple months and was gaining weight??? Think it could possibly be related to an increase in my florinef dosage around that time.

For the last year I have consistently taken in 1440 calories through tube feeds and have noticed that I have lost a little weight and have also gained some muscle. My florinef dosage has stayed the same during this time.

As for blood sugars Im not sure what we going on when I was only getting 300 calories. Over the last year however I have recorded some lows (60s low 70s) even though my tube feed runs continuously... still have not established a reason for it. I do question wether it may be related to the florinef as it is a steroid. BTW there were also times when I had lows on TPN which really didnot make sense.

Since having IVIG last month I have been able to consistently start eating a little so look forward to hearing what everyone has to day about eating and exercise.

[Mikey69]

Hi Faye and M@t, it is a pleasure to meet you both

Hi Corina and Ancy, it's very good to chat with you again.

THank you all for taking the time to reply to my post. I am hoping others may pick up this thread and maybe between us all we can figure something out!

Interesting that our blood sugars appear normal and yet we present with hypos. My lowest BSA has beewn 3.7, 3.9 and a fair few low fours.

Here is the UK there is a saying amongst diabetics that "if it's 4, you're on the floor" I can be symptomatic at 5.4 and yet can very occasionally be ok at 4.5, but generally, if i'm less than 5 i'm in trouble.

I saw an Endocrinologist a few weeks ago, and he hadn't even heard of Dysautonomia, much less the problems i am having. I explained it all, took in some posts from this forum, and he honestly didn't know what to do with it all. I have my 2nd appointment with him in a few weeks - that should be fun!

Faye and M@t, sounds like we were similarly active and careful how we ate before we became ill. I was (still am!) a fitness freak. I'm determined to get myself stable then i can get properly active again. I hate this ill crap!

Corina, hypos with no warning!? That's awful. I get a very small amount of warning, perhaps 5 mins. where my head/consciousness starts to feel really weird, if i don't eat immediately i become dazed/confused/weak/dizzy, etc. If i still don't eat i quickly reach the point of collaspe. WHat i go through is bad enough - but at least i get some warning.

Ancy, the only drugs i am on is 1.25mg Bisoprolol, for unexplained high blood pressure. THis could indeed be having an impact, but i suspect the moving less and having to eat more is the problem.

If you don't mind my asking Ancy is tube feeding your only way of receiving sustenance? Is that the result of Gastroperisis, Dysautonomia or both\/ \i'm sorry, i don't mean to pry, i'm still trying to understand Dysautonomia and all it's effects.

I can tell you all this much, i'm determined to figure this out somehow. I will of course keep you all updated with my progress,

Mike

[Guest ANCY]

Up until recently yes, I could not retain anything taken in orally due to nausea and vomiting. My gastroparesis is part of my dysautonomia symptoms, my gut does not regulate properly so anything I eat stays in my stomach for a really long time. After a while my stomach will have no more and up it comes...

In the begining of my battle with gastroperisis they put me on Total Parenteral Nutrition as they were not sure how long my symptoms would last since they didn't know what was causing them. (Was not dx with Dysautonomia until later) Due to repeated infections we progressed more rapidly than planned to a feeding tube. That wa my first tube in for a little more than a year before they pulled it. In hindsight it would have been better to wait as the improvments I was seeing were only temporary. My current j tube was placed in November 2014. It would not be such an issue but j tubes require major surgery to be placed, cut from sternum to belly button... anyway sorry for ranting it's just frustrating!

I am still very much dependant on the feeding tube, 1-200 calories will not take you very far... I'm hoping over the next several months I'll be able to increase that. My nutritionist said that once I get to 300 calories consistently then we can start backing off the tube feeds. I will miss my constant inflow of fluids though, especially the difference they make overnight.

[Debbie Rose]

Hi Mike-my first question I have is what kind of snacks and meals are you eating? are you following any portions percents-as in plate having % of meat to veggie to carb?

# Years ago I noticed dropping blood sugars an hour and a half after eating a carb-like cereal with sugar and milk- and the drop was fast and severe. In US BS by glucometer home checks normal is 90-110 and I would drop to 45 AND FEEL IT!! I saw a endocrinologist and he did some blood tests and said I was insulin resistant and so I basically started on a diabetic conscious diet and that was why I asked about food choices..I have educated myself on dietary changes for diabetics.

The important thing to remember is that we need carbs for energy-its the type of carbs that is important AND being sure to add protein to any carb intake. The bad carbs are all the simple ones-sugars,honey, agave,fruit juices are all the bad ones. They do not require digestion-it goes right into your system. The good carbs are those that require our intestines to digest it thereby burning calories and more slowly absorbing the carb-breads, crackers, cereals,rice,potatoes-sweet potatoes are better,corn,peas,backed beans (legumes-dry beans) Are all good carbs in correct "quantity" and must be eaten with the correct amount of proteins with it.

The American Diabetic Assoc has a great web site to help you learn the correct portions for meals and snacks- diabetes.org and a more abbreviated (I think easier to navigate) is dlife.com these will give you lots of info

Hope this helps

Debbie

[m@t]

Mike, where in the UK are you? I'm in Hampshire...

I also suffer with random high blood pressure but mine can be different in each arm and also different sized pupils.

I take candesartan primarily for migraine prophylaxis not that I was having classical migraines but the neurologist wondered my symptoms were a strange form of migraine. It is usually used as a high bloodpressure treatment as it blocks angiotensin ii which should make blood vessles relax. Strangely it has had a paradoxical effect on my BP which has risen by 10mmhg since starting and it has pushed my heart rate up from 40ish to 70ish! To me this implies some other system is wanting my bp to be high rather than just a high peripheral resistance.

In terms of sugar if I am extremely symptomatic having a number of chocolate bars within a few minutes can actually abort the attack. Not exactly healthy living but it beats lying in bed waiting to feel well enough to do normal activity.

[corina]

My blood sugars when having a hypo are measured at 2.4 (I think lowest was 2.1) I wasn't on the floor yet but shaking and sweating, it's an awful feeling. I have been having blood sugar problems for over 20 years now and am afraid that the octreotide I'm on re POTS doesn't help (can cause both highs or lows). The fact that I'm having both highs and lows doesn't help much. It does make my doc think though that for me it's a dys problem (unnecessary insulin dumps). Though hypos cause dizziness and other dys symptoms I can def feel the difference between my "normal" POTS and hypos

[Mikey69]

Hi Ancy,

omg! that's awful. I'm so sorry you are having to go through all of that. I must admit that my knowledge of Gastroparisis was/is very limited - your post really helps me understand better. Please, there is no need to apologise. I understand the frustration all to well! I've just had yet another hypo! yaay me! I think i may have the opposite problem to you. I'm convinced i have accelerated GGT. It's something i'm going to speak to my Gastro about in mid - Feb. I have sooo many questions - and so few answers! lol!

Hi Debbie Rose,

thank you very much for providing the website info. and for your insight of your experiences. I have always eaten well/healthily, etc. I have been trying to educate myself on hypo/diabetic lifestlyes since this roller coaster ride first started. I'm doing ok - i haven't collapsed in a while, which is always helpful But i know i still have some way to go. I've just had another mild hypo! I'm glad i've stopped counting - i ran out of fingers and toes ages ago! hahaha! I will definitely be visiting those websites! And i will look into the other advice you have provide, although i suspect i'm already doing most/it all.

Hi M@t,

I'm in Lancashire. The whole BP thing is fascinating, if not annoying!. I never thought i would develop high blood pressure. I've always been a real fitness freak, I really look after my body, so there's no way this should have happened under normal circumstances. It's all so **** bizarre. I used ot know my own body so well, now i feel like i'm living in a stanger! Weird! (This is me!) I used to do the chocolate bar thing too, but waist size was becoming a problem! And, apparently it's not the right approach anyway, so i've been experimenting with the 'right' foods and drinks for the past 6 months or so. I tihnk i just need to knowledge and practise. I also get the impression that sometimes nothing helps. I was eating 4,000 cals, per day last June, just so i did't lose catastrophic amounts of weight! yuk! I hated eating so much! (I'd post a puking smilie but there isn't one!). It magically righted itself! - no one can explain this!

Hi Corina,

Jeez 2.1! wow! that's ****** low! I can't believe you weren't on the floor at that! You must have felt terrible! I have been on the floor at 4.7! I hate the way hypos make me feel! They really frustrate me (I'd swear, but it's just not nice!!) I reckon it will turn out to be a weird 'Dyssy' thing too. I'm still struggling to tell the difference between POTS and hypos some of the time. I'm sure my poor foggy brain will figure it out at some point! One of my problems is i'm getting typical hypo symptoms with massive variations in BS. Anything from 5.2 - 3.9! God knows! I think my body has suddenly gone totally nuts! Well, they say pets are like their owners! And i've always been a little crazy!