So much to learn..

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Gladys said:
does exercise cause glucose levels to drop
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Yes. (Usually, anyway.) I'm guessing that that will also apply in reactive hypoglycaemia but it doesn't seem like much of a leap (exercise in people without diabetes or RH will tend to cause BG to fall).
 
Exercise will drop your levels gently because the muscles draw glucose out of the blood when you do gentle exercise like walking for a sustained period, but your liver should be able to release glucose to top you back up and prevent you dropping too low.
With RH, I believe it is the body's response to food (particularly carbs) which triggers the high followed by a low due to excess insulin being released too late, so eating before walking might be more of a risk than not eating..... the excess insulin released is the problem and it is released in response to food and particularly carbs....hence why you had that incident after eating cake. If you are going to eat before exercise then I would suggest something low carb like an omelette would be best, but as with all things related to blood Glucose and digestion/metabolism, you need to find what works for you as an individual, so you are going to need to plan little tests maybe when you have someone who can accompany you initially, to see what works for you as an individual.
 
Thank you for your replies Bruce Stephens and rebrascora. Both helpful. Thank you rebrascora for reminder information that RH is body's response to food, particularly carbs, which triggers the high followed by a low due to excess insulin being released too late. I have telephone call with diabetes nurse at g.p. practise tomorrow to discuss diet. What else do they offer? Are they RH aware. I will mention that my blood tests come back clear re diabetes hence RH being assumed as triggering falls. Is there anything else that it is worth asking once we have spoken about diet.
 
Sorry I haven't been around for a few days - thanks @Inka for drawing my attention to this thread!

@Gladys my partner R also has RH, as Inka said. He wasn't really given any advice or information when he was diagnosed (except to always carry fruit when he went anywhere, just in case!) but over the years he's found ways of managing it. There's an article on Wikipedia here - https://en.wikipedia.org/wiki/Reactive_hypoglycemia - which is very informative, and he does most of the things listed in the treatment section. He's found it helpful to split all his meals, so although the food he eats is fairly normal, he never has (say) a sandwich and a piece of fruit together for lunch, he'd always wait two or three hours after the sandwich before having the fruit. He's found high-fibre foods very helpful too, and also making sure he eats something fatty last thing at night (he usually has a yogurt just before bed) so he's less likely to wake up hypo in the night.

If the blood tests you've had for diabetes are HbA1c tests (standard for diabetes) they may not be an accurate reflection of what your blood sugar's really like, as the highs and lows will be balancing each other out. A glucose tolerance test (where you drink something sugary and they see what it does to your blood sugar over a few hours) might give a more accurate idea. A Libre would be even better, that would show you what you can and can't get away with eating. Some things may surprise you.

If it's not too late by the time you see this, it might be worth asking the diabetes nurse whether there's any chance of you getting Libre sensors on prescription - they'll probably say no, but it's worth mentioning that you had such a bad experience with that fall, and that the arrows and alarms might help prevent anything like that happening again.

Exercise helps, and you probably do want to eat something first, but ideally something which includes fat and/or protein rather than just carbs. Or spread your exercise through the day by having a short walk after every meal, or using a step-counting app, which is what R does.
 
Thank you TheClockworkDodo and for Inka for signposting my post to you. Like your partner I was given little advice other than to eat six small meals a day, but no education re slow release foods, what foods were helpful which might cause spikes then crashes. It does sound like getting the Libre is a must. I do not know what blood tests I had for diabetes. I have had no blood tests for reactive hypoglycemia either - do they exist? Medical tests involved a private body scan to rule out more serious reasons for faints. As they came back normal assumption made was that symptoms I was presenting with e.g. sweating, feeling need to eat more or at risk of fainting, fainting, indicated reactive hypoglycemia. Is there a specific test for reactive hypoglycemia? Thank you for information about eating and exercise. Over several years I have had to watch that I am eating enough when walking, can be just two to three miles, just got worse over this last year. I have noted that food which include fat or protein helpful before exercise, and to break walks into short walks after meals. Shorter walks is what I am doing to rebuild my confidence re walking, and was wanting to be food informed how to do this as safely as I can so thank you for this information. Phone call with diabetes nurse in about an hour so hoping this will be helpful and nurse is also reactive hypoglycemia informed. Will be printing out and saving to my computer wikipedia link. Thank you so much for your help.
 
Hello The ClockworkDodo. One further question. Did your partner find any support from the NHS that was helpful re reactive hypoglycemia as have just had call from diabetes nurse cancelling my appointment nurse stating reactive hypoglycemia too complex an issue for her. If NHS not helpful, was it internet that was mainly used, forums, anything else?
 
Gladys said:
Hello The ClockworkDodo. One further question. Did your partner find any support from the NHS that was helpful re reactive hypoglycemia as have just had call from diabetes nurse cancelling my appointment nurse stating reactive hypoglycemia too complex an issue for her. If NHS not helpful, was it internet that was mainly used, forums, anything else?
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You may find different health authorities handle who is responsible for your care by different people. It is apparently something that can occur after bariatric surgery and in some places, they would be looked after by that unit.
If you put reactive hypoglycaemia into Google, there may be a link to your health authority where you may then find a contact number and an outline treatment plan.
 
R has never had any advice from NHS except for the throw-away comment about carrying fruit, I'm afraid, @Gladys - and has never had any tests, like you he was diagnosed based on symptoms and the lack of anything else causing them.

Most of the information he has about RH he found out from other people who have it, so I'd say asking on this forum (there are other members here with RH, they may not have seen this thread though) or looking for an RH forum would be your best bet to help you learn to manage it.

The good news is it is manageable. I used to find R sitting shaking on the kitchen floor and have to feed him dried fruit, but that never happens now, the worst thing for him now is that if he does eat a carby meal he gets very sleepy afterwards. But no fainting or shaking!

I'd be a bit wary about googling (except, as LeadingLights suggested, for googling for NHS services, or googling for support charities or something of that sort) as there's so much inaccurate rubbish on the internet! If you have a specific question to ask here in the future, I'd suggest starting a new thread with RH in the subject line as that's more likely to get other people with RH to look at it.
 
I did wonder whether that may be case re NHS. That is a good idea about putting a general reactive hypogylcemia post out on this site too. So far the main reactive hypoglycemia forum/charity I have found is in America. Thank you for your help.
 
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