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Can't maintain deep sleep, non-stop waking ups. desperate (23 M)

I've seen dozens of doctors and yet, no solution, i have almost no options left. This case is a huge mystery since nobody knows what it is, i will basically owe my life to whoever that will give me at least some kind of a direction or will recognize the patterns of this unknown condition.

Male, age 23, Height 1.84 cm, weight 78 kg, caucasian. Duration of complaint: over 5 years and getting worse.

I will begin to explain. These are 2 photos of a graph via apple watch SE. I sleep like this EVERY DAY and even worse: https://imgur.com/a/ohNElXv - picture one https://imgur.com/a/ZdZNPGp - picture two (I also did a sleep study, results were similar)

The symptoms include both sleeping issues and both gastrointestinal issues. I will explain all of my symptoms and elaborate as much as i can:

1. I feel my heart pounding with a strong pulse, which makes it really hard to fall asleep. and also probably make it hard to stay asleep(ECG and Holter results were completely normal). This is the most annoying symptom that i feel like i can't sleep because of it no matter how hard i try.

2. As soon as i fall asleep, i immediately wake up from my sleep. cant sustain the sleep somewhat.

3. if i fall asleep on my stomach, 100% of the times i will wake up gagging and wanting to throw up.

4. Most of times in the 2nd half of the night, i have atleast 2-3 times that i have to pee and it disrupts the sleep, it comes with lower back pains that makes me want to change position every second. (Could be because the sleep itself is not constant)

5. Every time i eat or drink anything, it feels like the content is coming up back, and i have the constant urge to swallow, it happens regardless if i ate a big or a small meal. it even happens when i didn't eat anything at all but less frequently. (It happens even at night probably).

6. A feel of delayed bowel emptying. I go to the bathroom everyday so it's not constipation, however, it takes me over 30 minutes to finish my business without the feel of completely emptying. I can basically poop most of what i had in the first 5 minutes, but then i will have more poop even after 10-15 minutes. kind of delayed emptying.

7. When the food/drinks content come up and i have the urge to swallow, it DOES NOT burn! so i dont know if you can count it as reflux. it happens every 10-15 minutes or so in my daily life.

8. After big meals (elaboration of point number 5), i basically feel pregnant. My upper abdomen is bloated and feels extremely tight. my heart rate goes up and pulse feels extremely strong. And i burp and have the strong urge to swallow or else it feels like the food content will go up and i'll throw up. If i force myself not to swallow, i automatically start to breath fast to kind of calm the regurgitation.

9. Most of the times when i feel myself entering deep sleep, I have a hypnic jerk which is uncontrollable, mostly one of my limbs just jump, and it wakes me up and it's hard/impossible to go back asleep, it happens constantly.

List of medical examination that i did:

- Sleep study, no sleep apnea found, just diagnosed with insomnia and multiple waking up.

- ECG and Holter for heart, came back normal results, a little low blood pressure.

- Sibo breath test, came back negative for sibo

- bloodwork and hormones, nothing suspicious, Helicobacter pylori was negative. TSH was elevated at some perioud at the lvl of 7! but came back to 3-4 after a while. T3,T4 are good. Iron was a little bit low, Hematocrit and hemoglobin a little bit below the norm, nothing extreme. Ferritin was at normal range.

- CT for abdomen and pelvis. Absolutely nothing found (which destroyed me since i thought it will atleast find something that will explain my condition). I suspected i have hiatal hernia by the symptoms, the CT said that all organs are fine, but there was no addressing of the stomach itself.

- Heart ultrasound, nothing found.

- spine ultrasound, nothing found

- Anorectal manometry. it showed some kind of pelvic floor dyssynergy, i did physiotherapy for about 4 months and eventually the physiotherapist said that everything is fine with the biofeedback and that i do not have a problem there. (Makes sense since i know how to poop, my stool is just not consistent and comes out with weird delays.)

List of More stuff i tried for sleep & gastro symptoms by myself:

- bought expensive and comfy mattress.

- whole room is completely dark and the temperature is chill.

- i avoid my phone and etc hour before sleep.

- tried not eating or drinking hours before sleep.

- Took literally every supplement i could such as melatonin, magnesium, glycine for sleep and etc.

- tried mirtazapine as the doctor told me it will knock me to sleep like a baby, took between 1/4 to 1/2 of the pill. did practically nothing.

- Tried omepradex to lower stomach acid, did nothing for me (did it for a month)

- I tried every diet. Non gluten and lactose, being fruitarian, being vegan, fodmap diet. i even tried to do a fast of about 36 hours. The fast helped the most, i had success reaching deep sleep more times, but i kept waking up from them after a few minutes.

- Fecal matter transplant, I did it homemade (Gross i know). It did help, i had better stool emptying but it was temporary and it only relieved about 15% of the symptoms. (By my individual experience)

- I tried weed, didn't help and made matters worse.

- I live a healthy lifestyle, gym, swimming, martial arts, I even drink filtered reverse osmosis water (lol)

Conclusion or TL;DR: Cant sleep and cant poop normally. I feel my heart pounding strongly 24/7 which causes me not to fall asleep and i cannot maintain deep sleep. i wake up constantly throughout the night. I suffer unimaginable suffering, my brain feels damaged, i have no focus at all, i can't live my life and im not functioning neither at work nor at life, and i also have extreme mood swings due to the reasons i just explained.

I want to believe its hiatal hernia and its fixable, but CT didn't address the stomach and i don't know if it can cause such symptoms. I hope some one here can shed light on my condition and help me, Thanks alot for reading!

  1. Hi . My heart goes out to you. It sounds like you have suffered for a long time only to be left with no answers. Have you ever seen a neurologist? I am suprised that through all of your testing no one ever ordered an MRI of your brain. We are not medical experts by any means, but the digestive issues have a lot in common with gastroparesis, which is common among people with neurological disorders. Here is an article about it from our sister community for people with MS: https://multiplesclerosis.net/living-with-ms/famished-but-full-digestive-problems-and-their-relation-to-ms. I am not suggesting you have MS, but I thought the article might interest you. I sometimes experience that pulsing/pounding sounds that keep me awake, usually when my blood pressure is too high. It can be maddening. Do you also have high blood pressure? If so, medication might help. Please keep advocating for yourself and looking for answers. You deserve a diagnosis and treatment. Thinking of you and wishing you the best. - Lori (Team Member)

    1. Hi, I am sorry that this is happening to you. I am with you with point #1, 2 and 7. I didn't know how this happened. It just started two weeks ago out of no where. I tried melatonin and it worked for me the first night. Second night, it didn't work. Until the 4th day, I went to urgent care and Dr prescribed me Doxepin. It worked for me the first night and then I stopped taking it the second night. Since then I couldn't fall asleep even taking it for 4 consecutive nights. For the past 12 days even though I didn't sleep (seriously no sleep no nap), I felt quite awake and full of energy. Every time when I was finally about to fall asleep after rolling on the bed for hours, my brain just woke me up immediately and then I am awake again. Last night I finally started yawning a lot and thought finally there was hope, but again I couldn't sleep the whole night again. Feeling extremely frustrated. I just can't understand how people like me without sleep for so many days and still feeling more awake than anyone else. My heart also pounding 24/7, the feeling of anxious and making my diaphram feeling very tight and feeling like vomiting. Now I have this neck pain on my left side with burning sensation and I do pee a lot since I can't sleep the whole night. My boss urges me to take sick leave, but work is the only thing that I makes me stay focus. I feel devasted and hopeless. Have you tried any sleeping pills prescribed from doctor? Any help?
      I have gastritis and my doctor in the past prescribed me Famotidine, it really helped a lot. You can check with your doctor. Now I wonder if it's gastritis that prevented me from falling asleep.
      Also, I want to point out that if you have lower back pain and urinate a lot at night, it's usually due from weak kidney.
      Good luck to all of us. I hope we can all sleep well tonight!

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