New Symptom: Extreme Hunger and Insomnia — I Need Help!

[Wolfgang]

It’s currently 2:40 a.m. I’ve been trying and trying to fall asleep, but now I’ve ended up writing this on my phone.

I was doing really well for a while. There were many days when I forgot about my back pain, and especially, my sleep had greatly improved. I used to take minimal doses of quetiapine, milnacipran, and triazolam to sleep. But after I came to understand what it meant to “fall asleep without thinking about anything,” I was able to reduce my triazolam to half a pill and still fall asleep easily over the past three weeks. I felt confident, and after consulting my doctor, I stopped taking quetiapine.

Around the same time, however, I was hit with an unusually intense hunger. Since I’m underweight with a BMI of around 16, at first I was happy that my digestion seemed to be improving. But I started getting extremely hungry again just two hours after eating. It was a terrifying kind of hunger. I couldn’t fall asleep, and I would even wake up in the middle of the night needing to eat something — usually boiled eggs or sweet potatoes — just to fall back asleep. This sleep disruption has started affecting my daily life.

I thought this level of hunger might be a problem, so I got a blood test, but everything came back normal: blood sugar, HbA1c, thyroid hormones, liver function — all normal. One remaining possibility is a gastrointestinal issue. Physician told me that excess stomach acid can sometimes be mistaken for hunger. After hearing that, I became fixated on the idea of stomach acid.

At first, I thought this must be a physical problem. It felt different from my usual TMS symptoms. I’ve never experienced anything like this before. I used to eat dinner at 6 p.m. and go until the next morning without eating and still feel good during the fast. But now it’s as if a starving ghost has possessed my body — that’s how strange it feels!

I’m definitely not afraid of gaining weight. In fact, I’ve always had a bit of a complex about my thin and weak body, and I’ve tried for years to eat healthy and gain weight — though I’ve failed, partly due to IBS and lack of willpower.

But the idea of not being able to sleep due to hunger, or waking up in the middle of the night and feeling awful the next day — that terrifies me. And it’s already affecting my health. I’ve developed cold sores, needle on my tongue, and I feel sleepy during the day from lack of proper rest.

Is this TMS? I know gastrointestinal issues are common, but this doesn’t feel like a typical stomach problem. I don’t have any specific pain. It feels like maddening hunger. I really need to sleep, but the stress is overwhelming, and I’m scared this might actually be a real disease.

 

[Cactusflower]

"Around the same time, however, I was hit with an unusually intense hunger."

Oh, it's a symptom all right. I think it's quite TMS-y. We derive comfort from foods.
One of the most comforting foods are carbs - they fill us up and keep us satisfied (and it is sounding like perhaps you are craving them at night).
Experiment - try eating more healthy carbs at dinner and see how that effects your sleep habits.

When I had my worst anxiety, I dropped to 128 lbs. which is quite low for a 6'2" person. About 8 months after anxiety started to subside, my weight shot up to 180 and I was CONSTANTLY hungry. I wanted fatty, salty and sweet foods that I don't normally eat.

Of course there can be some physical implications from stress, anxiety and how this effects the adrenal glands, quartizol etc (lots of science about this) and....the worry about my weight and appearance etc. was actually creating this stress. So I played with my diet once again and went back to how I eat when I feel my best. I did begin to get hungry at nights, but then I started just carb load for dinner and if needed before bed which is something I've done my whole life and am normally slim. It helps me stay satisfied, and my brain doesn't scan for reasons I "can't sleep" ... which is something I suspect your mind may be doing.

I learned through journalling and meditation that this is a default of my busy brain that thinks unless it is working overtime "doing" it is not valued. I come from a family with a work-a-holic dad and a chore-a-holic Mom and a super achieving big sister. I'd try to journal and suddenly I needed the bathroom, then I'd need a sweater, then I'd have to sneeze... one excuse after another so I could not journal! Once I caught on and could laugh at the absurdity of it, I could ignore those things. The exact same thing began happening with mediation. Then once I increased movement it would happen with movement.
Lightly notice any patterns. Marvel at the creativity of your brain.
Be playful and experiment, and know that what you need to do this day, week, month during this time can change and be fluid. The idea is to be OK with that. Be OK with meeting your needs and seeing how much value is in that to you. To repeat what I wrote in another thread you had started, I used short meta (10 minutes to start off with) meditations to work on both my own worth, but understanding my worth within the universe - all you have to do is listen and repeat in your mind so they are pretty easy mediations to follow. These sort meditations pave the way for being ok with just "being" and helping teach the value of mediation to your mind. At first they were very hard and emotional for me, but that changed over time.

 

[JanAtheCPA]

Oh, it's a symptom all right. I think it's quite TMS-y.

To which I'll add: and look at the timing!

You did the right thing by getting checked out for this new symptom. But NOW you need to accept the results.

It's ironic how much we blame the medical system for focusing on physical symptoms, but I've always wondered about the role that patients have played in developing that dynamic over the decades. We're always looking for the one cause and then we expect the one magic cure.

Is it possible this doc felt some pressure from you to come up with an explanation? I think a LOT of doctors feel this pressure. Personally, if I'm concerned enough to get something checked out, I'm really hoping to get the all-clear, so I can stop being distracted by bullshit symptoms and do my TMS work.

That's your goal - to reach that point.

 

[JanAtheCPA]

And I just noticed that you're on Day 6 of the program. To quote @Baseball65 recently, "you're right on time!" It's super common to experience more symptoms, new symptoms, worse symptoms, the return of old symptoms, and/or increased anxiety as you start experiencing early successes. Your TMS brain is in a panic, and it is throwing everything it has at you, trying to distract you and convince you to quit what you're doing.

What you're doing is GREAT. You've already come so far. Try the meditations suggested by @Cactusflower, and practice them with the desire for your brain to be calm and accepting.

 

[Diana-M]

@Wolfgang
This might sound silly, but could you put a protein or energy bar by your bed to eat in the middle of the night if you get hungry? Maybe that would take the fear away and pull the plug on this symptom. The other idea is to embrace it to diminish its power.

 

[Wolfgang]

"Around the same time, however, I was hit with an unusually intense hunger."

Oh, it's a symptom all right. I think it's quite TMS-y. We derive comfort from foods.
One of the most comforting foods are carbs - they fill us up and keep us satisfied (and it is sounding like perhaps you are craving them at night).
Experiment - try eating more healthy carbs at dinner and see how that effects your sleep habits.

When I had my worst anxiety, I dropped to 128 lbs. which is quite low for a 6'2" person. About 8 months after anxiety started to subside, my weight shot up to 180 and I was CONSTANTLY hungry. I wanted fatty, salty and sweet foods that I don't normally eat.

Of course there can be some physical implications from stress, anxiety and how this effects the adrenal glands, quartizol etc (lots of science about this) and....the worry about my weight and appearance etc. was actually creating this stress. So I played with my diet once again and went back to how I eat when I feel my best. I did begin to get hungry at nights, but then I started just carb load for dinner and if needed before bed which is something I've done my whole life and am normally slim. It helps me stay satisfied, and my brain doesn't scan for reasons I "can't sleep" ... which is something I suspect your mind may be doing.

I learned through journalling and meditation that this is a default of my busy brain that thinks unless it is working overtime "doing" it is not valued. I come from a family with a work-a-holic dad and a chore-a-holic Mom and a super achieving big sister. I'd try to journal and suddenly I needed the bathroom, then I'd need a sweater, then I'd have to sneeze... one excuse after another so I could not journal! Once I caught on and could laugh at the absurdity of it, I could ignore those things. The exact same thing began happening with mediation. Then once I increased movement it would happen with movement.
Lightly notice any patterns. Marvel at the creativity of your brain.
Be playful and experiment, and know that what you need to do this day, week, month during this time can change and be fluid. The idea is to be OK with that. Be OK with meeting your needs and seeing how much value is in that to you. To repeat what I wrote in another thread you had started, I used short meta (10 minutes to start off with) meditations to work on both my own worth, but understanding my worth within the universe - all you have to do is listen and repeat in your mind so they are pretty easy mediations to follow. These sort meditations pave the way for being ok with just "being" and helping teach the value of mediation to your mind. At first they were very hard and emotional for me, but that changed over time.

Oh, that was a big weight change. I’ve been trying to continue meditating, but it’s been a bit difficult since I don’t really feel anything special. For example, thoughts like “What am I supposed to be thinking?” or “Am I meditating the right way?” keep popping up in my head. I think I need to focus more on recognizing and accepting my own value.

 

[Wolfgang]

To which I'll add: and look at the timing!

You did the right thing by getting checked out for this new symptom. But NOW you need to accept the results.

It's ironic how much we blame the medical system for focusing on physical symptoms, but I've always wondered about the role that patients have played in developing that dynamic over the decades. We're always looking for the one cause and then we expect the one magic cure.

Is it possible this doc felt some pressure from you to come up with an explanation? I think a LOT of doctors feel this pressure. Personally, if I'm concerned enough to get something checked out, I'm really hoping to get the all-clear, so I can stop being distracted by bullshit symptoms and do my TMS work.

That's your goal - to reach that point.

You're right — I need to accept the outcomes! It’s a bit embarrassing, but I went to the hospital again today to get some stomach medicine, and they mentioned it might be a psychological issue. It feels like I’m experiencing “symptom imperative” and developing new symptoms!

 

[Baseball65]

But the idea of not being able to sleep due to hunger

We derive comfort from foods.

First, are you not able to sleep because of hunger or is there a VOICE Telling you that you won't be able to sleep?

I Hear the Voice. I have , what for me is a Bad Habit of eating in the middle of the night. There is a voice saying "You didn't eat enough and now if you don't wolf something down you won't be able to sleep"
It is also a LIE.

If I go get back in bed I am usually asleep again in seconds...maybe a few minutes.

From glancing at clocks and paying attention, I have also learned it only happens the very first time I get up...say about an hour after I go to sleep. If I do eat, it will happen again in another hour. If I use TMS like therapy and say out loud to myself. "You're not really hungry, it's just an old conditioned fear" I pound a glass of water and go back to Bed. And I feel a lot better in the morning!

My Mom was sort of a Lizard. Very low compassion and comforting. The Only thing she did that had any care in it was make sure food was available.
Most of my struggles with food and over eating tie back in with this..."Mommy...Love me!"

I also was awakened once to be told My Father was Dead. I think between the two factors, I have always looked to food to be a comfort...which is weird because I often go all day and forget to eat anything. Living on coffee, cigarettes and diet coke...the occasional protein bar. But when I need Comfort from Mommy, there isn't enough food in my Fridge

As Sarno pointed out with his Physicophobia, most problems we are having are tied up in our beliefs about our self. Thinking we have a problem is effective as a real problem in keeping us distracted.
If your relatively new to the work and this just started, I'd pile it in the 'Things trying to scare and distract me' pile.

What does food mean to you? why would not sleeping be a big deal? What have you learned or experienced around it?

write these things down for yourself. You might be surprised.

peace

 

[Cactusflower]

Oh, that was a big weight change. I’ve been trying to continue meditating, but it’s been a bit difficult since I don’t really feel anything special. For example, thoughts like “What am I supposed to be thinking?” or “Am I meditating the right way?” keep popping up in my head. I think I need to focus more on recognizing and accepting my own value.

And those are only thoughts. They are meaningless.
What you do is just go back to focusing on the air coming in and out of your nostrils (or the rise and fall of the lungs). And when you think of something else, you just return to the focus of the breath.
This is the practice.
Monks do this for HOURS on end, and have said it never changes - only the time between the thoughts and returning to the breath changes over time. Much time. But even those who meditate for hours a day, for years on end still have to refocus on the breath. It's just how the mind works.
You are doing nothing wrong, and everything right.
What the mind is really saying is "is it really this simple?"
When you've struggled and fought with yourself for years on end, life seems to be drama, struggle and hardship. Your brain tends to become addicted to this, and you are simply giving your mind a break from it all. Even just for a few seconds. It's the beginning.

 

[Marie A.]

Hello Wolfgang,
my first association while reading was that I recognize the anxious undertone in your description of the symptom so well from myself. From my perspective, what you’re describing sounds like you have a strong fear of new “illnesses,” a fear that your progress with back pain might slip away due to interruptions in your sleep – and not least, people with sleep issues (something I know all too well) often develop an anxious relationship with sleep, hypervigilance, and hyperfocus around it. Also, you’ve been taking strong medication to sleep, and stopping them can lead to temporary sleep issues – but the body finds its balance again. By the way: carbs make you tired and increase melatonin, so it’s quite possible your body is just tired right now. And as you say yourself: you are “fixating” on the idea of stomach acid – this really sounds like strong health anxiety to me. Maybe try asking yourself whether there’s an alternative interpretation. For example, you could approach the “symptom” in a more neutral and less judgmental way and say to yourself: “Aha, maybe my body just needs more nutrients right now, or my sleep is temporarily unregulated – but the body naturally finds its balance again.” -I know that’s really hard!
I think the best way to respond to this "symptom" is to be confident and trust your body. And I think that’s often a central point — again, speaking from my own experience — that TMS inherently involves a loss of trust in one’s own body. While I wouldn't necessarily say 'this is TMS', I would say your reaction feels very “TMS-minded.” I believe that heightened interoception — something many anxious people experience — might cause you to perceive sensations like stomach acid or hunger more intensely. I’m almost hesitant to write this, because I sense that this kind of reassurance-seeking might be typical for TMS, and in the long run, it may not be helpful to you.

More generally about sleep: eating more carbohydrates in the evening (especially if you’re underweight) can actually be beneficial for sleep. Melatonin supplements might also be an option as a transitional support after discontinuing medications like benzodiazepines. Of course, all of this should come from a place of self-kindness — not from the urge to ‘fix’ your sleep, but from listening to your body with softness and care. I’ve spent some time researching sleep disorders, so if you ever want more tips, feel free to reach out.

 

[JanAtheCPA]

I would say your reaction feels very “TMS-minded.”

I like how you put this @Marie A.! With my emphasis on the word "reaction". So much of what we need to do is to be mindful of our reactions, and learn to change them.

 

[dystonicrunner]

But the idea of not being able to sleep due to hunger, or waking up in the middle of the night and feeling awful the next day — that terrifies me.

I am new to TMS with my "chronic pain" and "dystonia" and 8 other "diagnoses" but I could have written this. How timely, because actually TODAY I realized my longer history of insomnia and Night Eating Syndrome (yes I would wake up in the middle of the night to eat sometimes multiple times) was actually TMS. So so interestingly, I stopped doing that after 20 years, yes, TWENTY YEARS, and BOOM was hit with more classic TMS symptoms. It has now been just over 1 year since I have eaten at night and just over 1 year of all the other stuff.

But my friend, a BMI of 16 means you do need to eat more. Yes much of it might be TMSey, but you likely do need more calories. My problem was I was also too busy to fit eating enough during the day while maintaining a vigorous exercise routine and I could distract distract distract so well from my hunger given all the things that needed to be done and all the things to think about during the day (stress!)... but at night, but once I laid down my body/brain said WE NEED TO EAT and would wake me up to do so. I do believe eating more during the day as much as you can will help you and will decrease the fear at night. Or eat a bunch of cereal before bed, that's what I do now, and like another poster said, carbs help insomnia!

 

[dystonicrunner]

I thought about this more this morning when I woke up and reread my post. When I used to wake up in the middle of the night, my mind would go right too "I'm starving and I won't be able to fall back asleep until I eat." The severity of the hunger also was not real as it would still be there even if I had had enough to eat or even excess to eat during the day. This ended up in me going downstairs and eating and then would be calmed and could go right back to sleep. Early on in this year after the development of my dystonia and severe pain, I used to still wake up in the middle of the night and the obsession would be "where is the pain now and how bad is it" or ruminating on the fact that I may never be able to walk (let alone run) normally again. But I wasn't hungry, and I would not eat.

This has much improved over the last few months where most nights I sleep through the night other than some half concious tossing and turning, and if I do actually wake up enough to think and start down that fear rabbit hole, I start doing a progressive muscle relaxation starting with my feet (usually where most of my pain is) and my mind will drift to the bad thoughts but I focus back on restarting on the feet, and my mind will drift again and I repeat, and I never usually make it past my knees and I'm asleep again. So even though I have this damn pain and damn dystonia now wow it's been a major improvement in something I struggled with for almost half my life. Like I legit slept less than 20 times through the night in 20 years without getting out of bed at least once.

Also just read something very interesting today in the Mindbody Prescription where waking up in the middle of the night to go to the bathroom is very common in TMS. I used to wake up to go to the bathroom all the time and I always felt if maybe I can stop myself from waking up to go to the bathroom, then maybe I won't realize I'm hungry and stop this whole night eating thing. Interestingly enough I rarely wake up needing to go to the bathroom anymore either. My fluid intake or when I drink fluids (ie before bed) has not changed at all. Crazy huh?

Thank you for sparking some reflection for me about my whole history of this terrible nighttime cycle. I used to worry that I was doing some serious damage to myself in regards to my GI tract (ie, eating food and then lying down for hours) or even dementia from having such a broken sleep cycle. But I do think that this pattern contributed hugely to the fight or flight my brain is stuck in as messing with eating and sleep (ie feeling like you are starving or unable to sleep well or enough) is pretty core to making your brain feel like, well, you might die.

 

[Wolfgang]

I thought about this more this morning when I woke up and reread my post. When I used to wake up in the middle of the night, my mind would go right too "I'm starving and I won't be able to fall back asleep until I eat." The severity of the hunger also was not real as it would still be there even if I had had enough to eat or even excess to eat during the day. This ended up in me going downstairs and eating and then would be calmed and could go right back to sleep. Early on in this year after the development of my dystonia and severe pain, I used to still wake up in the middle of the night and the obsession would be "where is the pain now and how bad is it" or ruminating on the fact that I may never be able to walk (let alone run) normally again. But I wasn't hungry, and I would not eat.

This has much improved over the last few months where most nights I sleep through the night other than some half concious tossing and turning, and if I do actually wake up enough to think and start down that fear rabbit hole, I start doing a progressive muscle relaxation starting with my feet (usually where most of my pain is) and my mind will drift to the bad thoughts but I focus back on restarting on the feet, and my mind will drift again and I repeat, and I never usually make it past my knees and I'm asleep again. So even though I have this damn pain and damn dystonia now wow it's been a major improvement in something I struggled with for almost half my life. Like I legit slept less than 20 times through the night in 20 years without getting out of bed at least once.

Also just read something very interesting today in the Mindbody Prescription where waking up in the middle of the night to go to the bathroom is very common in TMS. I used to wake up to go to the bathroom all the time and I always felt if maybe I can stop myself from waking up to go to the bathroom, then maybe I won't realize I'm hungry and stop this whole night eating thing. Interestingly enough I rarely wake up needing to go to the bathroom anymore either. My fluid intake or when I drink fluids (ie before bed) has not changed at all. Crazy huh?

Thank you for sparking some reflection for me about my whole history of this terrible nighttime cycle. I used to worry that I was doing some serious damage to myself in regards to my GI tract (ie, eating food and then lying down for hours) or even dementia from having such a broken sleep cycle. But I do think that this pattern contributed hugely to the fight or flight my brain is stuck in as messing with eating and sleep (ie feeling like you are starving or unable to sleep well or enough) is pretty core to making your brain feel like, well, you might die.

"The sentence you wrote — 'Where is the pain now and how bad is it?' — is exactly the thought that runs through my head every time I wake up at night. It really shows that we’re suffering from the same condition, TMS. Even the way I start to think, 'My health is completely falling apart, and things are going to get worse' when my eating and sleeping get disrupted... it's like you've copied those thoughts straight from my mind. It hurts to know you’re going through the same struggle.
But if there’s any good news, it’s that my intense hunger issue has been resolved for now! I think it was probably related to hormonal changes due to my menstrual cycle, although of course, TMS-related stress played a part too. I hope your symptoms improve soon as well!"