reactive hypoglycemia

I had my first seizure 6 months ago and they chaulked it up to a fluke.  Since then I have had 2 more and they linked them to hypoglycemia.  Apparently, this is a side effect of the surgery.  I now can recognize it is coming and know I have a very limited time to take my glucose tabs before I wake up in an ambulance.  If  anyone has any suggestions I would greatly appreciate it.  Thank you!

I have noticed this --can't remember exactly when it started but I noticed it happening a few times in the fall after eating cereal with high fiber cereal.  Also oatmeal (with and without milk). 

I get shakey/fuzzy and have to eat immediately or I will almost faint.

I noticed this was more predominant while preggers too.  I had gotten to goal before I had kids.  Gained 50 lbs with BOTH kids.  I was down to 138 but now at 163.  Up 5 lbs in past few months.  grrr and trying to eat healthier Bfast seems to be BACKFIRING on me!  I can eat eggs/proteins etc... and have NO problem.

It also seems to be a connection with caffeine.  I have a cup of caff coffee each morning with benefiber in an attempt to stay regular.  I plan to start experimenting with diff combinations and measuring my blood glucose.  I borrowed a glucometer.

Today I tried coffee, steel cut oats and right now waiting to see what happens.

Tomorrow I think I will try DECAF coffee and steel cut oats and compare.  IF I can rule out the coffee/high fiber combination then I will just have to find something else to eat for bfast.  I had yogurt and flax seed the other day without problems.

I just ate soooo much yogurt immediately after surgery that I got turned off to it!  AND I crave a bowl of wheat/bran chex with milk SO bad here lately.  BUT I know it is a sure thing to CRASH my blood sugar.

Oatmeal does it to me as well.  Cream of wheat doesn't.  Today had the oatmeal and exactly 2 hours later I was crashing at 69.

I have been like this since 3/07 surgery was 8/04. First time stupidity...St. Paties and drinking next day on the floor tunnel vision and sweating. It took me years to figure out with was diet related and I am in healthcare.
I went 50 below goal to 128 and didn't eat much, forgot to eat most of the time, I was actually way too small for along time. For the first year it only happened a few times, blamed my blood pressure and would sweat and pass out in the pool.
In summer of 08 decided to check my blood sugar during one of the issues...they were happeneing once-twice a month. I was in the 40's and realized what it was, dur. 
I keep my med alert bracelet on, I gained some weight up to 188 in summer of 09 but found out I had MS and got put on Topamax for migraines...23lb gone in 1 month.  I am now pretty normal for 5'9 154 but took myself off Topamax till recently, I am losing again.
I have the hypoglycemia happen a couple times per week sometimes, all depends on my stress....stress eater!!!  I was so to the book for years and was too small, broke the rules and this happened.
I know when something is wrong now...I can go from 260 to low 40s within 20 minutes...stopped using tabs or sugar due to that.  I carry peanut butter crackers and protein bars that slowly takes me up and don't have the hugh crash down for over fixing from the tabs.
Like I tell people it is a fineline controling this especially when you are a busy mom, nursing student and wear other hats.  Oh and you don't have insurance ;-)
I can only blame myself for when it happens because I have eaten too many carbs or simple sugars mmm froot loops in moderation!  But it is just one more thing I have to cope with so I can be smaller then 327 or 355 at my heaviest...at least I am off the couch most days.  Well unless this stupid MS is acting up but I can't imaging being like I was with MS...I probably would of off'd myself.

Tracey

I wrote the original message approx 2 years ago and have posted else where a few months ago .. then found my old post so thought I'd post an update on this .. I still have problems with the hypoglycemia and seizures .. I still check my BS when I feel something isn't right .. am not diabetic and wasn't before surgery either .. Endo Dr didn't tell me I had to check regulary or anything .. plus my insurance will not pay for the strips since I'm not diabetic .. but it still drops to the 20's and 30's or even it's in the 60's I can start feeling bad .. changing my diet hasn't helped any .. seems that I can eat one thing one time but the next time it is what sets me into an episode .. so there is no rhyme or reason .. I seen my RNY surgeon this week and she agrees with the Endo Dr that it is nesidioblastosis and I am going to have part of my pancreas removed .. I'm going to have a CT scan next week and see the Endo Dr again .. then will schedule the surgery .. Was told if they don't take enough then the surgery would have been pretty much pointless but if they take to much then I could be insulin dependent the rest of my life .. Not sure which is worse .. but the lows I have have worn me out literally ..
But again just thought I'd update on my old post .. Hope everyone else is doing well with theirs and that they found something that helped them ..
Rhonda

When did you first develop symptoms, and did they get worse over time?  

I am 13 months post op, and have discovered that if I eat, then exercise, I feel awful.  I suspected I might be hypoglycemic based on my symptoms (I've been a nurse for over twenty years), but had no glucometer to check my blood sugar.  Last night I had a large meal (1 3/4 taco bell tacos and a half bag of cinnamon twists with about 6 ounces of milk), took a two mile walk and felt horrible for about an hour and a half afterwards.  I wasn't sure I'd make it home. 

Today I was at work and felt iffy.  When I checked my blood glucose, I was at 70.  The number isn't horrible, but the fact I'd been snacking and had been doing my sedentary job (not physically active) and was still that low bothered me as much as the fact I was symptomatic.  So far today, I have had 8 ounces of milk at 5:30, PamT's chai from 6-6:30 (one serving), and about an ounce or two of Gordettos, a mostly baked salty crunchy snack.  I hadn't had anything to eat for about an hour before.  I checked my blood sugar about noon.

I don't have any caffiene other than what is in one serving of PamT's chai.  I have not had any seizures of any kind. 

As long as I don't eat, I feel great.  Guess I'll get to goal after all. . . 

Hi Rhonda,
I am 7 years out from my Open RNY. I just had my first seizure 1 1/2 weeks ago. I'm seeing an Endocrinologist and waiting to see a Neurologist. Since your posting is 3 years ago, I'm wondering if you can give me an update on how you are doing. What is the latest on your health and if you have any advice for me. Thanks. Jennifer, aka Butterflygirl

Hi Jennifer .. Sorry to hear about your seizure .. I hope things go better for you .. From my experience my seizures were not caused by epilepsy as the neurologist stated .. I knew what my body was doing and when .. anyways, the Endo I seen stated that he knew from tests he ran it was reactive hypoglycemia .. however, as my seizures persisted and the "diet" they wanted me on and such didn't work he thought again after addl tests it was nesidioblastosis .. I think I have posted on here before that was my diagnosis and the way to take care of it was to have part of my pancreas removed ..

Fortunately my surgeon didn't feel comfortable about that and suggested I have a second opinion which I actually finished some testing in the hospital last week and the conclusion is my diagnosis is still reactive hypoglycemia but it is considered severe due to the seizures .. I am not diabetic but they have put me on a diabetic med called Acarbose .. to take with the first bite of my 3 daily meals .. not with snacks .. so far so good .. I am going to go for a follow up next week and then again in approx 3 months .. The Dr said they are finding more and more those of us that are far out having this reactive hypoglycemia .. crazy ..

I was also getting up in the middle of the nights but not aware I was doing it .. but would find the next morning clues I had gotten up and had eaten things to evidently bring my sugars back up .. So I was apparently having sugar lows in the middle of the night unbeknownst to me .. 
But again will see how the meds work .. so far it's been good but it's barely been a week and a half .. feel free to email me or something if you have any other questions or just wanna talk about it! smile .. 

Hope  your Dr visits go well!

Rhonda

I had my first clonic tonic (grand mal) seizure last December and had another in April which landed me in an ER here in Israel. My blood sugars are wacked. I had surgery in 6/09 so that's how long it's taken to start. I am also dxed with severe hypoglycemia but not much is known here in Israel. The endo I saw ran a fasting glucose test where I just fasted and they checked me every hour with a finger stick and blood draw. I got down to 69, which I call "seizure territory" and they started revving up what they were doing. Finger sticks and blood draws every 15 minutes. The activity must have stimulated my adrenalin or something because my sugar went back UP. I left shortly thereafter after having had a cup of tea and some crackers. I went home and slept all day.



I think I am getting better about recognizing the feeling of when I drop. I also get a weird flashing vision issue where I cannot see directly in front of me but images are flashing all around. I have learned if I am out to get a bottle of Coke stat and start sipping it. It works better than glucose to get out of that "I'm going down any second" feeling.



I take clonipin 10mg once a day and I also use Xanax if I feel it coming on so I imagine its also stress related. I took my working hours down to 4 days a week to try to lower my stress. I'm a single mom on my own in IsrAel raising a 19 yo son with Aspergers so in many ways its extremely stressful knowing I could go down at any time.



The worst part is the ER dxed me as syncope or fainting but I had significant cheek and tongue injuries. Problem is when I come around I am coherent and can answer questions but I don't have memory of maybe the first two hours after the seizure even though I answer the questions right and seem fine and responsive.


I also lose short term memory of about two weeks.
I carry Coke with me if I am going on a long day, glucose tablets, granola bars and chocolate for a real emergency. I keep a literal arsenal of food at work but I M also gaining weight. I am still good in the BMI but my clothes no longer fit an I have a lot of belly fat. I'm starting yoga and Pilates soon to help with that. I also am trying the 5day pouch test to cut out the easy carbs I'm eating like crackers, tea cookies, etc. fortunately in Israel fruit and veg are ridiculously inexpensive so I can eat Tom hearts content.



My conclusion is I have become a bad eater, I am sensitive to certain sugars and also milk, sugared yogurt, etc. Can still eat pudding,,,,how weird!!!! I got a copy of the glycemic index and am working to stick by thAt. Drinking protein is a actually a good choice for me since I am dehydrated a lot (and I know that has a lot to do with my problem as well.)



Bridget in Jerusalem

RNY 6/26/2009. 214 => 110 => 140 at 5'5". My goal is 125.

Hey there Rhonda! I'm working on getting approved for lap band or the sleeve. My mother had gastric bypass surgery 9 years ago and developed reactive hypoglycemia/hyperinsulinism. To this day she has to follow a certain diet or her blood sugar is very low. She has not had any seizures but it's interesting to know that this is more common than my surgeon let on in a recent information meeting. He stated this condition was very rare....yea right. So, don't know if this will help but she has a few tips she wanted to share:

1) Try to stay away from root veggies. She sticks to green stuff like asparagus, lettuce, green beans, etc.

2) She pretty much lives carb free/sugar free. The market has made huge advances in making low to no carb items and sugar free items. She can find low carb pasta in the health section and if you're craving sweets she found a sugar free box of brownies. If you need fruit, they now have packaged in the freezer cut up strawberries in a sugar free syrup. She will heat that up and top it with cool whip. 

3) Protein: if you can chew it up and get it down- eat it. Try to stay away from fattier meats. Fish, moist chicken, or a greek salad are some of her favorite to eat.

4) NO bread. 

5) take vitamins. That woman takes every vitamin she can find- it's ridiculous but obviously helping....

6) Glucose tablets. These save her when she is having an extreme low. She keeps them in her purse and at home. If she feels low, she takes one and within 10 minutes is back to her normal self. She doesn't do injections at this time, but does check her levels daily (especially if she's feeling low). Another thing that helps her come out of a low is a spoonful of peanut butter. 

 

Hope this helps everyone!