Basilico
Florida
- Messages
- 948
First, I just wanted to say that I'm sorry you're dealing with this. It sounds awful. My husband, who has CFS, had an experience that might be relevant to what you're going through now and I wanted to share it in case it's helpful.
A few years ago he spontaneously started getting these really intense attacks. We later realized they were panic attacks, likely triggered by blood sugar and blood pressure drops and were related to gut flora (a specific probiotic helped). But when the attacks first started we had no idea what was happening. It was really scary. One time it got so bad that we called an ambulance in the middle of the night because he felt like he couldn't breathe.
Sometimes he'd get these attacks if he got out of bed in the night to use the bathroom, or even if he just sat up in bed. Sometimes they happened while he was driving or doing nothing at all. His heart would start racing like crazy and he felt like he was going to die.
During that time, I think the fact that he didn't know what was causing the attacks gave him anxiety about them which fed into the cycle of making them even worse.
Eventually, with a combination of things, the attacks went away. I don't know if what helped him will help you, but here's what he learned/did:
1) We learned almost by accident that he was pre-diabetic and that his blood glucose was not in control. He's a lean, muscular guy and his endocrinologist (who was the best doctor I've ever known) said she was very surprised because he didn't have any of the typical physical signs of pre-diabetes. We are actually convinced that he isn't a "true" pre-diabetic, but that his glucose/insulin issues are actually caused by his CFS because he is really, really atypical. When he's having a CFS flare up, his glucose control is awful and spikes really high with a very small amount of carbs, but when he's feeling more "normal" he can eat a pizza and walk a little bit and it's totally fine.
There is a very simple way to test if you've got blood sugar problems. He did the official 2 hr glucose test, which means you go to a hospital, they measure your baseline blood glucose, give you a glucose drink, then measure your glucose 1 and 2 hours later. If your glucose goes much too high at the peak (@ 1 hour after ideally should be around 120-130) or it doesn't go back down to an appropriate level (around 100) after 2 hours, you've got insulin resistance.
If you have a finger-prick blood glucose meter (they are relatively cheap) you can test this at home. Check your baseline glucose (when you first wake up is a good time). Should be somewhere between 80-99. Eat a good amount of carbs (I don't know the level in the glucose drink, but something like 80 grams of carbs should be good). Test your glucose after 1 and 2 hours. What's really important is BOTH how high it goes at the peak (1 hour) and what happens after 2 hours. If I goes crazy high after 1 hour (what sometimes happens to my husband) then you may get a massive insulin release which can cause the glucose to go too low...and also cause symptoms similar to a panic attack.
2) It seemed like blood pressure was also involved, because some of the attacks were triggered by standing up or sitting up. He was still doing some light stuff at the gym at this point and he started getting this weird thing where after doing some weights, his BP would drop really low instead of going higher like it was supposed to. He never had POTS before, this really seemed like it came out of nowhere. Luckily he doesn't have much trouble with BP nowadays.
3) After the attacks had been happening for a while, he started eating low-carb and this seemed to help but the attacks didn't go away totally. Then he started taking the probiotic Mutaflor. After about 3 months of daily Mutaflor use, we realized that his attacks had totally stopped. He feels very strongly that it was the Mutaflor that made the biggest difference for him, but to this day he still has to be really careful with what he eats to keep his glucose in check.
*Have you tried taking Ox Bile to help you digest fats? A friend of mine had his gallbladder removed and he has been taking bile when he eats something fattier.
This was a really long (sorry for that). I hope something in it was at least a little helpful.
