reactive hypoglycemia

I hope the meds help you .. have they had you do that glucose test?  Where they draw your blood then make ya drink this glucose then draw your blood every hour for like 3 to 4 hours?  Even though I had testing done with my first seizure and being in the hosp that was like in '04 .. and then my last test was in Nov .. but wasn't able to get into see the endocronologist til this past Wed .. and that is when it was "again" official it's reactive hypoglycemia and noted as severe .. so will see where this all goes .. I can certainly relate to not being able to drive .. have had my license revoked with all my seizures but have it back now .. but I do make sure I'm not having a low coming on before I drive .. I hope they find out the "whys" for your seizures .. Rhonda

Hi Melting,

I am finding you everywhere while researching this seizure problem post gastric bypass. I have learned a lot from all the websites I have come across and think this is a very serious complication that cannot be overlooked. I wish there was a way to determine if someone will develop this syndrome before they start cutting and making permanent changes to the gut causing vitamin deficiencies and malabsorption. I really wish I had learned more about this before having the surgery. No matter what I do I have to exercise and that has not changes.

My first seizure left me with mouth injuries so I tend to drink my calories. My husband and I spilt up after my first post op year and since then I stopped walking and have been working so much I did not seem to have time for it. The last 2 weeks I have gone back to it and feel better but with the braces it makes it hard to eat most foods while on the road so I drink them. I stopped drinking starbucks a few months ago feeling this may have been one of the causes of my seizures. Miss it though. I was never really a coffee drinker before. Just easier to get ot down. I am also hypoglycemic and have reactive hypoglycemia with certain foods. Funny thing though it seems to change and I think stress is related. 

I am going to keep following your progress and see what you find out. You are a powerful voice out here. Keep on going!!

Linda

Hi there.

I am currently cutting out most of my caffeine to see if that drops any of my symptoms, and I am half way there.  I wonder.

I would like to hear more of your story.

It's called NIPHS - or nesidioblastosis.  I have it and have had 60% of my pancreas removed at Mayo in Rochester.   Lyn

Lyn, What had they done before it got to the point of having to have a portion of your pancreas removed?  Has it affected your weight?  I mean did the removal cause an increase or decrease in your weight or were you and are you able to maintain it?  I was told that would be a last resort for myself so am not sure what I have to "look forward" to per se .. I hope things are better for ya .. Rhonda

There really isn't much they can do for this.  I took Precose and it did help for a couple months but then it stopped helping and I couldn't increase the dose due to intestinal issues it was causing.

I had lost 10 pounds right after surgery but I managed to gain that back by being stupid.  Gee, they fixed the insulin thing, so now I can eat junk and not have problems.  WRONG!  So I've gotten smarter and am diligently working on fixing my mind set to eat better.  However, since I still experience lows, not as low as before, I still need to eat frequently.  I'm trying to figure out how much I need to eat to get the sugar back up without gaining wt. 

Thought I was chime in on this as well. FYI, I too took Precose and from there moved to Proglycem which worked great for awhile! Please read my profile for my in-depth details, but I am currently almost 2 weeks out from having the tail of my pancreas removed as well as all of my spleen. I had what was the first pancreas vein testing done in Kansas/Missouri @ KU last month and surgery a few weeks ago. After having 4 years of seizures, enough was enough. I have been blessed in that I was also recently approved by insurance for a continuous glucose monitor (the Freestyle Navigator) because of my severe reactive hypoglycemia. Most insurances won't approve for someone who is not a Type I diabetic, but my documentation was overwhelming. Since surgery, my glucose levels have been NORMAL and I level out normally! Each day gets better and better and I can't be happier with the results. My surgeon stated that this surgery was a way bigger sugery than the RNY 6 years ago. *sigh*

As of this writing I no longer need ANY diabetic medication and will continue to monitor via my CGM for 6 months, but my endocriniologist has already indicated that I'm CURED! *faint*

Oh...as far as the pathology goes on my pancreas...one report said no tumor, one said yes, the doc told me it was positive and dispersed throughout.

Best wishes & I'll be glad to answer any questions. While on medical leave I intend to move my story to a public blog so others out there can learn of this complication. Meltin Mama...love your blog! :-)

 Hi all,
Has anyone gotten an answer yet about why this is happening to people so long after surgery?  I could understand the "my body is so used to pumping out insulin" if it were in a year or two post surgery.  But I'm five years out and only now have developed this problem.  I also see an endocrinologist at the end of the month.  I saw the PA for my surgeon who says that ALL of my symptoms can be explained and resolved by my diet.  Fine but WHY is this happening now?  And the fact is, sometimes I will have sugar or carbs or whatnot so how do I monitor then to prevent a seizure or coma???

I too am having problems with hypoglycemia.  Was just in the hospital for a stroke workup that came back negative.  I have had 2 of these episodes that causes excessive sweating and an out-of-body sensation.  I did not dump.  I have been searching and searching for information.  I have found one thing talking about a StomaphyX as a fix for post reactive hypoglycemia.  Has anyone had this done for a hypoglycemic problem and it worked?  They go in through your throat and fix the stoma.

 I have not heard about that or know anyone who had that done.  Have you learned anything more about it?
Why did you have a stroke workup?  What all was going on?  Did you have the one-sided numbness/weakness like I was having?