does anyone else....

[sunshine44]

does anyone else have bizarre night time stuff like your eyes are super dry and foggy when you try to go to bathroom and you can hardly sit up as if you are super intoxicated,but you aren't and or wake up with a very fast heart rate clammy and shaky and needing to eat? Your feet feel warm and mild numbish like neuropathy and you feel incredibly anxious upon waking?

This is my night, almost every night for past few years, it gets a little better when stress goes down or something happens that eases burden on my liver but it has been relentless past 4 months.

I am trying to calm myself down and tell myself somehow this will pass one day, it feels like there are chemicals missing from my rain or something. I feel like I am the only person this happens to.

When I was hospitalized all they could see was that my heart rate goes real high and I can't move a ton or real slow but had no real ideas and released me.

It is creating much stress in me and I am trying to figure out how to settle it more.

 

[jesse's mom]

bump

 

[poetessinmotion]

Did you get checked for hypoglycemia? Have you tested your glucose when you wake up at night feeling like that?

 

[blacksunwolves]

I was thinking the same about hypoglycemia as I suspect this is what's going on with me but the problem is trying to diagnose and then treat it in the UK seems near impossible for a doctor to do! (At least that has been my experience)

I had a chat today with a sympathetic rep from a continuous blood glucose monitoring company as I've been thinking of trying it for a month to see what my blood sugar levels are up to, especially during the night when I'm constantly waking with uncomfortable symptoms like yours.
I've actually been wondering recently if the hypoglycemia is CFS, as they are both so poorly recognized in mainstream medicine!?

I hope you feel better soon sunshine 44, I really do sympathise but hope that with at least some knowledge of it possibly being linked with blood sugar, it might help you to try something else that might help?

 

[sunshine44]

Did you get checked for hypoglycemia? Have you tested your glucose when you wake up at night feeling like that?

yes endincrinologist says negative for hypoglycemia yet naturopaths say hypoglycemia due to adrenals....I no longer test my sugars bc it causes too much stress in me and they were never lower than 60 or 70 which endincrindologist says is normal, my body thinks otherwise but at tis point sugar doesn't even take all the sysmptoms away, its is complicated.

 

[sunshine44]

I was thinking the same about hypoglycemia as I suspect this is what's going on with me but the problem is trying to diagnose and then treat it in the UK seems near impossible for a doctor to do! (At least that has been my experience)

I had a chat today with a sympathetic rep from a continuous blood glucose monitoring company as I've been thinking of trying it for a month to see what my blood sugar levels are up to, especially during the night when I'm constantly waking with uncomfortable symptoms like yours.
I've actually been wondering recently if the hypoglycemia is CFS, as they are both so poorly recognized in mainstream medicine!?

I hope you feel better soon sunshine 44, I really do sympathise but hope that with at least some knowledge of it possibly being linked with blood sugar, it might help you to try something else that might help?

interesting. I have thought about having one of those monitors but truth is all my symptoms do not disappear after consuming starch, protein and so forth...I mean it helps but it seems more complicated than just blood sugar at this point. Being on glucose in hospital always helps but drs see no need for it and take me right off of it..then I have POTS sysmptoms after they take me off.

so you get similar symptoms? Please tell because I haven't met many people like me and it is really upsetting to have to eat so much while doing everything to settle your system but this just keeps happening.

 

[blacksunwolves]

I totally understand and can see how testing blood sugars all the time can be a stressful event! Hugs!
Really interesting to see your reply about the differences between the endocrinologist and the naturopath, thank you for sharing that as it helps me to also understand the diagnosis situation a bit better too.

Interesting finding about the glucose and pots symptoms link too! I'm pretty sure I have pots and there is a link with blood sugar issues there I think, although I am reminded that even if it is hypoglycemia, it's still just a symptom of something else, rather than the cause of everything.

I've been having a look into blood sugar stuff for myself again recently after a diet change seemed to bring on a dramatic rise in symptoms and my sleep going really off again.
I guess you could say I get typical hypoglycemic symptoms of anxiety/heart racing, constant waking in the night, dry eyes and mouth, needing to pee urgently, feeling shaky, hungry, extreme mood swings, over-heating, weird dreams/nightmares, strange tingling/numbing sensations in the body, etc. I get them throughout the day and night but do find them more disturbing at night of course having been awoken from a peaceful sleep with a thumping heart and extreme feelings of anxiety for no reason at all!

I'm wondering if my stuff might not be helped by being underweight so am now focused on trying to up calories and see if it makes any difference. . .

 

[poetessinmotion]

In my case, hypoglycemia has been and still is a part of my CFS. I was diagnosed with Reactive Hypoglycemia three years ago, and in my case it is for sure related to the adrenals (I have borderline secondary adrenal insufficiency) and I feel it is also linked to POTS, although I can't explain the relation, and I haven't found a suitable explanation. I've spoken to many people with RH over the years and many of them have POTS, although not all people with POTS have RH.

In my case it was very severe and ended up bedbound for months with an hypoglycemia crisis every hour and a half during all day and night, every day, during which I usually collapsed. After 22 kilos gained, I ended up in hospital for a week and then it took months until I was properly diagnosed. I had to wear a CGM (The Freestyle Libre) for a year and the Social Security System in Spain still pays for my monitor strips for measuring blood glucose.

In my case, when I was diagnosed what helped me the most was a ketogenic diet. The "ideal hypoglycemia diet" is highly individual but it should be a balance between carbs, protein and fats. The carb intake depends on the person's tolerance. In my case, I started up with almost zero tolerance to carbs and I built up until I could eat 35-40 grams per day, and after a year I was able to even eat some starchy veggies.

I had to treat my adrenal fatigue with adaptogens and probiotics have also helped lots, specially with my PMS, which got horrid when I started to develop RH. I still have a hormonal crazy party inside, but it has changed from hell to bearable (at least, this part of my whole puzzle). I've learned to find my way to eat, to adjust over time to my present needs which might change (I could do paleo for a while, now I can only eat keto), and to ALWAYS wear snacks and water with me and my glucose monitor.

I hope this helps

 

[sunshine44]

In my case, hypoglycemia has been and still is a part of my CFS. I was diagnosed with Reactive Hypoglycemia three years ago, and in my case it is for sure related to the adrenals (I have borderline secondary adrenal insufficiency) and I feel it is also linked to POTS, although I can't explain the relation, and I haven't found a suitable explanation. I've spoken to many people with RH over the years and many of them have POTS, although not all people with POTS have RH.

In my case it was very severe and ended up bedbound for months with an hypoglycemia crisis every hour and a half during all day and night, every day, during which I usually collapsed. After 22 kilos gained, I ended up in hospital for a week and then it took months until I was properly diagnosed. I had to wear a CGM (The Freestyle Libre) for a year and the Social Security System in Spain still pays for my monitor strips for measuring blood glucose.

In my case, when I was diagnosed what helped me the most was a ketogenic diet. The "ideal hypoglycemia diet" is highly individual but it should be a balance between carbs, protein and fats. The carb intake depends on the person's tolerance. In my case, I started up with almost zero tolerance to carbs and I built up until I could eat 35-40 grams per day, and after a year I was able to even eat some starchy veggies.

I had to treat my adrenal fatigue with adaptogens and probiotics have also helped lots, specially with my PMS, which got horrid when I started to develop RH. I still have a hormonal crazy party inside, but it has changed from hell to bearable (at least, this part of my whole puzzle). I've learned to find my way to eat, to adjust over time to my present needs which might change (I could do paleo for a while, now I can only eat keto), and to ALWAYS wear snacks and water with me and my glucose monitor.

I hope this helps

oh my God I feel like I am in this right now. There are no words to describe the hell. I probably should go get a new sugar strips but just o used to the hospital circuit saying that's not it.

would you black out? I am terrified of that. So hard to tell if I am seeing stars from adrenal issues or blood sugar sometimes....what a mess!

I did really bad on a no carb diet, it actually exacberated things but we are each so different.

 

[sunshine44]

was that happening to you even when you were eating every hour?

I am bedbound now due to adrenal issues mainly it seems and POTS.

 

[poetessinmotion]

was that happening to you even when you were eating every hour?

I am bedbound now due to adrenal issues mainly it seems and POTS.

Yes, I got to the point where I HD to eat every hour and even every twenty minutes sometimes at the worst moments.

I didn't lose total consciousness during a crisis but I couldn't walk, move or speak clearly, and was a total shaky mess in panic. I had to be carried to bed and once I collapsed in the middle of the street asking for help desperately to strangers who handed me water with sugar. It was scary as hell.

My keto diet started with the foods I could tolerate, but I couldn't tolerate zero carb either and it took me four months to start seeing results.

Actually, having a CGM was the most helpful thing, because I saw my glucose curve after a meal and started to take notes of which foods and combinations were safe, and then build my diet this way. High fat was the best to hold my BS for longer periods.

I got all the symptoms described above. I could even wake up in the middle of the night with half of my face numb, with the urgent need to pee and eat, air hunger and so dizzy I could barely walk. I always had to keep food by the bed and the monitor. I still do.

 

[sunshine44]

oh wow. and I have had to go low fat because my gallbladder these past 6 months. I agree fat helps. I am in such a mess. The things I need to do I can't due to digestive distress.

I am trying so hard to remain calm through it. What is the lowest your sugar would go to?

I am getting ready to ask someone to get me some new strips. I never caught mine under 60 or 70 but then again I never took it first thing in a panic, I was always grabbing food instead.

This is honestly hell. I might try to look for one of those meters. I am so tired and just want to sleep.

My endincrinologist said my blood sugar is fine :0 yet I can't fast and have to eat constantly so something isn't right. I am bedridden for God's sake.

I want so bad to survive all of this. I cannot believe drs do not know how to help me or spot this in me. They just say no addisons, no hypoglycemia and no diabetes. Yet I have bnever been able to do fasting bloodwork!! I have food next to me CONSTANTY. I used to be underweight when illness began years ago, past 3 years I have now gained 40 lbs from this....just nuts.

I have never met anyone quite like this. People think its anxiety but it isn't it is like I need food all the time during flare ups....which has been 3 years now.

 

[sunshine44]

I can do nuts olive oil chicken and turkey for fat but can only do 14 foods now, slowly trying to get more in me, fats has been very tricky.

 

[Shoshana]

@sunshine44

You are a and a very special person. I don't know what to recommend , but I want to remind you how much value you are , here at the forum.

I do understand how scary and difficult, this is.

Hang in there and keep looking for ways to take good care of yourself.

 

[sunshine44]

thank you <3

 

[blacksunwolves]

I cannot believe drs do not know how to help me or spot this in me. They just say no addisons, no hypoglycemia and no diabetes. I have food next to me CONSTANTY. I used to be underweight when illness began years ago, past 3 years I have now gained 40 lbs from this....just nuts.

I have never met anyone quite like this. People think its anxiety but it isn't it is like I need food all the time during flare ups....which has been 3 years now.

@sunshine44 I can see quite a few similarities in your situation reflected in my own.
I had the test for Addisons, a doctor once told me he thought I was hypoglycemic by looking at me but becasue of no diabetes on testing, it didn't go anywhere.

What's interesting is I had a recent realisation that my symptoms also seemed to start when I went underweight a few years ago and now I am focusing on building myself back up in the hope that a stable weight will help to calm things down.

I have tried various diets including low carb and keto/paleo eating in the past but I would also crash too much and I feel a lot better with eating more carbs, although they have to be the right ones as at my worst, refined carbs and even cooked vegetables lead to too many reactions and I was severely carb intolerant so much so that I was reacting to pretty much everything and I couldn't eat fresh fruit or baked starches without an intense burning sensation in my face along with deep physical anxiety. My weight dropped so much I was diagnosed as anorexic by the doctors who believed I had an eating disorder but since then they have failed evenmoreso to take my concerns seriously.

At the moment I am using a really heavy and moist sprouted wholegrain wheat bread (it has the consistency of cake) which my body seems to tolerate even better if I freeze and defrost it before eating which I'm putting down to the resistant starch that creates which helps to keep blood sugar reactions calmer and more stable. I am curious to try raw wholegrains too and see how I feel on those which will also be naturally in a resistant starch form, as they are raw and haven't been cooked. I do hope this might be of some help and thank you to everyone who's shared in this post, it's also helping me tremendously.

 

[poetessinmotion]

oh wow. and I have had to go low fat because my gallbladder these past 6 months. I agree fat helps. I am in such a mess. The things I need to do I can't due to digestive distress.

I am trying so hard to remain calm through it. What is the lowest your sugar would go to?

I am getting ready to ask someone to get me some new strips. I never caught mine under 60 or 70 but then again I never took it first thing in a panic, I was always grabbing food instead.

This is honestly hell. I might try to look for one of those meters. I am so tired and just want to sleep.

My endincrinologist said my blood sugar is fine :0 yet I can't fast and have to eat constantly so something isn't right. I am bedridden for God's sake.

I want so bad to survive all of this. I cannot believe drs do not know how to help me or spot this in me. They just say no addisons, no hypoglycemia and no diabetes. Yet I have bnever been able to do fasting bloodwork!! I have food next to me CONSTANTY. I used to be underweight when illness began years ago, past 3 years I have now gained 40 lbs from this....just nuts.

I have never met anyone quite like this. People think its anxiety but it isn't it is like I need food all the time during flare ups....which has been 3 years now.

The lowest reading I found was 46, but it was not my worst symptomatic moment (so I think I crashed even further). 70 for me (and for the adrenals) is already low and it is an added stress to the body. The roller-coaster goes like this: adrenal exhaustion creates more hypoglycemic crisis but you need to stop low blood sugar in order for the adrenals to heal. What most doctors don't get is that the symptoms are not created only by low readings but by fast shifts in glucose and rapid swings in blood sugar (i.e., I could go from 130 to 74 in 10 minutes and stupid doctors saying I was well when it was hell).

The tests that you should take are basal insulin together with basal glucose, sodium, potassium, liver markers, and the several hour glucose tolerance test with insulin readings (be careful with this one, I did not tolerate the sugar and made the roller-coaster worst for months). For the adrenals, the stimulation test with ACTH is the one that provides more useful information.

Maybe you should support your adrenals through this process and probably it would be helpful for your energy and general well-being. If you can't tolerate much fat, add lots of veggies (fiber) to slow down the absorption of glucose.

Do you tolerate avocado or coconut milk? If you tolerate nuts, cashews are my best staple. They have the perfect ratio fat/protein/carbs to up my glucose levels when I'm down without spikes and drops.

 

[sunshine44]

thank you so much, very helpful. Yes, same. I think I drop quickly and I am just sitting here in fear lately because it has been so constant for sooo many months now and I am so worn out. Digging deep to get through this tough chapter, having a extremely long and severe POTS flare and blood sugar stuff....is just a bit much for me this time around. Hoping and praying it just keeps leveling out.

I just stopped more of my supplements slowly lately because it seems I have become sensitive to so uch again. Will reintroduce when I am stronger (adrenals).

I can do coconut milk and yes to most nuts thank God.

Thank you for the tips. I wish you good health too. This really takes a toll on one.

 

[poetessinmotion]

I really hope you get better, @sunshine44. It is one of the toughest things I've gone through.

I really hope you can use a CGM or if you are in the UK you can try the Freestyle Libre (yo can buy it without prescription). Every sensor lasts for 15 days and although the readings are not highly accurate you get used to the way it works for it to be helpful.

Please take much care. A diary with notes about the foods you eat and your response is also helpful.

Another tip, if you tolerate coconut milk, is to put veggies of your choice with chicken in a pan, add coconut milk and a mild curry. Add seeds or nuts to all your salads, olives if you tolerate them and decrease carbs slowly. I started taking away all simple sugars, then white breads, pasta rice, then fruit and finally all whole grains and legumes. But it should be gradual and not cold turkey, and definitely not zero carb.

As I told you, it took me 4 months to see results after I started completely keto (25-35 grams of carbs a day) and no cheats at all.

Hold on, you can do this! send you lots of strength.

 

[sunshine44]

thanks I really need the hope today <3 kinda at a breaking point. thank you.