I’ve long had a theory/suspicion that TN might be part of Metabolic Syndrome, but because it’s a rare condition it’s not being recognised as such so I wondered if any of you might be diabetic or pre-diabetic or have any other related metabolic condition, such as heart disease, high blood pressure or even just gallstones! I’d also like to know if any of you are overweight or obese but I realise that might be a sensitive subject so no need to confess if you don’t want to! I, myself, am 3 stones (42lbs) overweight and I’ve had gallbladder disease and lost my gallbladder but otherwise don’t show any of the more serious metabolic diseases. I do also have GERD (GORD in the UK) and oesophagitis from that so I’m just a diabetic waiting to happen!
I’d love to hear from anyone who is or has been diabetic or has any other ailment in that range. I’d love to know how much these things are crossing over. Thanks!
Yes, I am diabetic (type 2) and overweight. The diabetes started about 2 years before the TN. Hope that helps, feel free to ask anything else that could be helpful. I have also had gallstones in the past.
Thanks for jumping in, I love your name! Just as long as you never need to change it to ‘Plain Desperate’! Can I ask if you’ve changed your diet at all for your diabetes, or do you just treat it with insulin?
Good for you. Can I ask how much and what kind of carbs you manage in a day? And has your low carb protocol improved any of your health markers, if you’ve had them retested?
I have to stick to a very low carb diet but still need metformin and linagliptin, pain and stress put my blood sugars up so I’m kind of fighting a loosing battle.
I have no cereals, potatoes, rice, pasta or anything containing wheat. no simple carbs (sugars etc). I use xylitol to sweeten, and avoid most fruits and try to stick to berries. I don’t have any limit on fats and protein. Funnily, my cholesterol and blood pressure have gone down since I started this diet despite the fat. I eat lots of cheese, cream and vegetables. Despite this my bs are hovering around 9 - 12.5 not good. But I have been decreasing my meds so my pain is probably nudging them up.
I try to limit my carb intake to less than 20g per day.
I have had gallstones in the past but since I started this diet I have had no sign of any gall stone issues. I do have several auto immune disorders though they are a walk in the park compared to the tn and hemicrania.
Hope that makes sense and is helpful.
Good luck
Many thanks for that, Desperate. I have to say I’m amazed you are still so overweight on such a low carb diet. Do you think that’s being caused purely by the diabetes or do you think some other thing/s are at play, maybe in your meds? Were you heavier before this? Did you lose some weight then plateau or have you been stuck like this for along time? Has a doctor or dietician ever suggested why you might still be so heavy? Also, just one last question, have you ever done the opposite and tried a (very) low fat diet?
I had 2 diabetic pregnancies which caused me to gain 120lbs with the first then only lost 60lbs before I got pregnant again and gained it back.
I did lighter life and lost 40lbs, it is one of those faddy milkshake diets which limits you to 600 calls per day (obviously very low fat) but put it all and some back on immediately I stopped. I did it for 3 months, had a personal trainer twice a week, walked the dog for 1hr every day, rode my horse 3 times per week, and walked 8miles to and from the lighter life club once a week. I also had 6 kids and a small holding so I basically never sat down.
When I was first diagnosed with type 2 I did a low fat diet and actually put more weight on. Sticking to the low carb tends to make me maintain or maybe lose 1-2lbs per month, but I gain it straight back when I have a tn attack, my bs tend to shoot up to 15-20 during an attack.
And in answer to your question, no I haven’t had any help loosing weight or any explanation as to why I am so heavy and find it so difficult to loose weight. The NHS is useless.
I have tried several meds which made me gain even more weight, atm I think they’re all pretty good as far as weight gain went.
Any ideas would be greatfully received, I am desperate and seriously considering a gastric band.
I hear you with the 600 calorie diet. That might be great for losing weight, but it is completely unsustainable. Personally, I think diets like that should be illegal, they are so irresponsible. They do such terrible and irreparable damage to people’s metabolisms. Is that possibly what your problem might stem from, repeated dieting? Have you been a yo-yo dieter? I’ve done several long-term diets over my life (lasting a year or more) and they all did terrible incremental damage. After each one I’d be a little heavier than the one before. Plus, as the years went by, I developed binge-eating disorder, because of constant dieting and food policing. I’ve finally stopped it, but my weight is stuck at 12 and a half stones and won’t shift, despite me being a very clean and nutritious eater. I’m not really doing low carb, of course, but I have thought of it often. I know it works to lose weight, I’m just not wholly convinced I could stick to it long-term and I’m not prepared to do another short-term diet. If I can’t find a way of eating I can stick to for life, I’m not doing it. No more weight gain or eating problems for me!
I have trigeminal neuropathy, but otherwise I’m completely healthy! My father had diabetes, but all my blood sugar reading have been very good. I’m totally normal weight, very active, and in great shape for my age (54).
I also eat a fairly low carb diet, mostly Primal, with very little grains. Very little sugar, and no artificial sweeteners (besides gum). Artificial sweeteners can cause insulin release, as well as affect the gut microbiome, both of which can have effects on your weight as well as other health issues. I eat lots of vegetables, some fruits, pastured meats and dairy, etc…I eat this way because I’ve done a lot of research and truly believe it is the way we were meant to eat. Plus I can eat really good food.
If I want to lose a few pounds, the most effective thing I have found is intermittent fasting. It is really good for you if you are prone to diabetes, and not difficult at all, so you might want to check it out.
It’s very frustrating to work so hard to stay healthy, but still have this issue! Hoping that eventually I can heal.
I actually haven’t done that many diets, up until now I have tried to just increase my excercise, the 600 calorie one was an emergency step for a wedding.
But recently my health has affected the amount of excercise I can tolerate.
I find the low carb diet is the most practical and most likely to stick to but nothing is perfect.
I agree with ziggurat, artificial sweeteners do almost as much damage to my bs as sugar, of course xylitol is not an articulate sweetener and has all sorts of other health benefits so I’m happy using that.
But basically in the long term I don’t know what I’m going to do, I already have retinopathy so I have to get my sugars down and keep them there before I go blind. It’s scary.
That’s interesting, Desperate, about the artificial sweeteners. Have you actually measured this in the real world? I mean have you tested your blood sugar levels after eating sweeteners and found it elevated? I’m asking because I use Sucralose as a sweetener. I find it the best because it cooks well and I mostly use sweetener to sweeten fruits. Also, it doesn’t have adverse effects on teeth. But my only concern with it is the theory (as yet unproven, I have to note!) that it may elevate your blood sugar just like real sugar does. That’s why I ask, have you actually seen this in action or do you just feel it may be impacting your blood sugars?
P.S. Sorry, too many italics in there, aren’t there?!
Yes, I have tested the theory, xylitol has no effect on my bs, I never really got on with sucralose but aspartame and saccharin are really bad. Apart from them being poison basically they raise my bs almost as much as sugar.
One example being a lemsip with saccharin to sweeten took my bs from 9 to 15 within minutes and stayed raised for over an hour. Of course you could blame at least some of that on me being ill but I was ill when I tested before I had the lemsip…
As with anything, I’m sure other people will disagree, but that is my experience and personally I think artificial sweeteners are mostly responsible for the general weight gain and ill health in today’s communities. If it wasn’t for the diabetes I would just stick to sugar.
Many of the sweeteners will not raise blood sugar, but all of them will raise insulin (some quite a bit), which can’t be measured at home. Raising insulin will also start shuttling fatty acids into your cells, and help bring on insulin resistance. They also have proven effects on the gut microbiome, which will effect metabolism among other things.
My dog almost died last week when he got into my sugar-free gum. This has really made me think a lot about all sweeteners, even so-called “natural” ones such as xylitol and stevia. If a tiny amount of xylitol can kill my dog that easily, I really don’t trust it in my body. Sure, it is from a natural source, but the processing to extract and concentrate it is tremendous. Nothing our ancestors could possibly have ingested.
That’s interesting, Desperate. Of course, Lemsip has sugar in it as well as sweeteners (I know because I had flu recently and searched high and low all over Edinburgh, looking at every brand under the sun, only to discover there isn’t one that doesn’t at least have some sugar in it.) I assume this is because a) the drugs it contains are too bitter to be well disguised by sweeteners and b) the sugar is needed to produce a syrup for soothing qualities for painful throats. So, of course, given this, it could just be the sugar that elevated your blood sugars, rather than the saccharin content. It is however an indictment of sugared drinks! They always say they are the worst offenders for diabetes and it looks like in your instance they are right.
Yes, there’s quite a bit of controversy over whether sweeteners elevate insulin, Ziggy. There was an initial study done that showed they did, but it was then proven to be flawed, I believe, but more importantly, when they’ve tried to replicate it they haven’t been able to - so the jury’s still out on that one. Likewise, no-one’s been able to prove the impact on the microbiome yet, other than in rodents. But like they say, although rodents resemble us very closely (I can think of a few people…) it doesn’t give proof that the same is true for humans.
As for Xylitol, I think I remember reading somewhere (probably on the back of an Erythritol packet!) that sugar alcohols are dangerous for dogs (animals?). Unfortunately the only one I can use with any safety is Erythritol because I have IBS and it doesn’t like sugar alcohols. I eat a sugar-free chocolate sweetened by Maltitol, but two squares is my dead strength or it’s gut upsets. Additionally, I’m not overly impressed by their sweetening qualities - you kind of have to pile it in to make an impression because it has lower sweetening qualities than real sugar or artificial sweeteners, plus there’s the cooling mouth feel. That just makes some things taste plain odd! As if that lot wasn’t bad enough, it’s very expensive proportionately and I am not convinced by it being so much more healthy than Sucralose or any other sweetener; it’s as highly processed as the rest of them! I don’t see the point in paying extra for less sweetening power and no real health benefits. I’m not convinced any of them are very healthy, but I’d rather consume a little Sucralose than a lot of sugar alcohol!