Stomach ache but only at night | nocturnal abdominal pain | and what I did about It.
Stomach Ache But Only at Night | Nocturnal Abdominal Pain | And What I Did About It.
If you have found this page, chances are you too suffer a mysterious abdominal pain but only at night. I suffered this for over 10 years and eventually worked out a cure. I cannot offer that this will help you at all, but I write this in case it helps at least one other person.
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The chances are you are reading this in the middle of the night as you continue to search for help in desperation. I’m hoping my story might offer some hope and help.
The discomfort would wake me up, a broadly diffuse discomfort, not excruciating, but enough to wake me up and then prevent going back to sleep again. The main focus of the pain was the left lower abdomen, 2 inches below my belly button and offset to the left.
You know the story already. Persistent visits to the GP, but only to be dismissed as irritable bowel syndrome (IBS), all diagnostic investigations coming back normal, multiple medications tried without effect. Permanent fatigue from insomnia as part of the package and then the raft of secondary problems such as aches and pains, issues with work, overall unreliability, disbelief from everyone else and on and on.
Background and initial onset of night-time abdominal pain
I was a nurse and at the time I was working as an occupational health advisor, now working as a therapist in mental health. One night, out of the blue, at around 1-2 am, I awoke with an abdominal discomfort just below my right ribs, over my liver area.
Rather concerned it was my liver (or gall bladder), I booked an appointment and was referred to hospital for investigations.
- abdominal ultrasound – normal result
- blood tests – normal result
- colonoscopy – normal result
- gastroscopy with biopsy – normal result
- stool samples – tested for blood, parasites, tapeworm, virology, bacteriology – all normal
- tests for helicobacter pylori – negative
After a period of a few months, this nocturnal pain subsided and my life went back to normal.
Progression of the symptoms to diffuse abdominal pain at night
About 2-3 years later, symptoms gradually reappeared with a difference. I’d be waking up in the middle of the night, with mild lower gut pain, but if I moved about and then managed to fart, I’d be able to go back to sleep again. These periods of discomfort would last a month or so and then vanish for a period of time before starting up again.
Over the following ten years the frequency of episodes increased, the duration of the episodes increased, and the intensity of the pain increased. This eventually got to the point that normal life was almost impossible owing to the adjustments I had to make to my sleep-waking cycle, the consequences of insomnia and fatigue and all the secondary problems that arise from that.
Luckily I am self-employed. I know that if I were in fulltime employment, I’d not be able to maintain that job and would be faced with the situation of being the guy who looks very well, but claims to be ill and unable to work and facing much incomprehension or disbelief from employers, doctors, relatives, and friends. I can imagine such a situation would only compound the problem out from being a simple medical difficulty and into a psycho-social nightmare.
If you don’t look unwell, people assume you aren’t unwell. As a result, despite explaining to people time and time again the problem, as time passes they forget and assume you are well. Thus every time you tell them you are visibly ill, it surprises them and you have to explain it to them all over again. And again, and again. Every. Fucking. Time.
But they never actually listen. It just washes over them, like every time before.
Then there is the other category of person who, knowing little of the reality of your situation, decide that they know exactly what you need to be cured and then won’t go away as they take you on as their pet-project.
Hot and Bothered?
One thing I did notice was that around this time I’d sometimes wake up in pain and very hot. The hotness wasn’t due to the central heating or heavy bedding. If I uncovered myself and allowed my body temperature to drop (would take about an hour) I would be able to go back to sleep again.
Investigations and attempted treatments
It soon became clear that my GP practice had long dismissed me as being some kind of crank. I had been offered lots of dietary advice and medication, none of which helped. My given diagnosis was IBS and I know only too well that once such a diagnosis is made, it is almost impossible to get doctors to move beyond it. In medical parlance, this common effect is known as “labeling.”
So I began my own research. I am sure you know this only too well from your own investigations. This is what I tried:
- Was it the water? I recognised that the symptoms had started shortly after moving house to a new area. As a hobby, I breed fish and am well versed in water qualities, electrolytes, nitrites/nitrates and so forth. I was also aware that having moved house there were certain fish breeds I could no longer keep in untreated tap water owing to the GH of the water. I requested a tap water analysis (you can get this from the local water board – it’s common for fish breeders to do this) and stopped drinking water from the tap. Initially, I switched to filtered water, and then when there was no improvement from that, I switched to drinking only bottled water. Did this for over a month without benefit.
- I went up to a clinic in Harley Street for skin patch allergy testing. I didn’t think this would show up anything, and despite being tested against a wide range of common allergens, nothing showed up.
- I spent a small fortune on a private consultation with a leading gastroenterologist and had a colonoscopy, biopsies, etc. Nothing negative showed up.
- I saw a chiropractor (getting desperate at this point) and whilst I walked away straighter and feeling pretty good having been thoroughly crunched and cracked (this alone made it worthwhile and I went back for more) there was no improvement in the abdominal symptoms.
- FODMAP – I followed the FODMAP diet to the letter for months. No improvement.
- High fibre diet. I began eating bran daily and a high fibre diet generally. I persisted with it but whilst I pooped a lot more, the symptoms were made worse than ever.
- Given the problems with high fibre, I switched to a meat-only diet. No improvement to symptoms.
- Lots of pro-biotics. Everything from the aerobic probiotics (milk-based probiotics such as Yakult) and anaerobic probiotics (Kombucha, Saurkraut, Kimchi etc) and whilst this did seem to improve overall health, they tended to significantly exacerbate the symptoms.
I tried slow-release peppermint (“Colpermin”), Buscopan, fluoxetine (“Prozac”), low dose tricyclics (amitriptyline), omeprazole, ranitidine, every new age and herbal digestive preparation known to man. Nothing helped.
During these years, four other symptoms emerged, but both were repeatedly dismissed by doctors as either secondary or irrelevant.
My tongue was permanently coated in thick whiteish goo. Daily scraping with a tongue scraper, flossing, and meticulous brushing did nothing to reduce this. Each and every morning, my tongue was again thoroughly coated.
A lot of the time, my breath could peel paint. It was clear that this was emanating from my stomach rather than from my mouth.
A strange skin plague developed on my right hand. No matter who I showed this to, everyone told me the same thing – I must be rubbing my hand on surfaces and not realise it, possibly as I sleep. The same patch appeared on my right big toe, I was told this is from shoes rubbing. I know only too well, this is not the case.
The other is that I developed herpes lesions on my lower back. These seem to happen after each episode of abdominal pain. Doctors told me this could not be the cause of the symptoms, after all, I had IBS, and that I needed to relax more because stress is a known trigger of herpes outbreaks.
I became increasingly convinced there was a correlation between herpes and the nocturnal abdominal pain, which by now was every night.
The other thing was constipation. Most of the time, the stool was normal, but when I “pushed”, nothing happened. I’d get heavily backed up and resort to laxatives (the only one that worked was Dulcolax, 4mg) and I’d have to take this 3-4 times a week. As you will probably know, this itself then gives rise to all sorts of additional issues.
I reported this symptom to my doctor but of course, was simply dismissed and instead offered more anti-depressants and a referral to the mental health counsellor to discuss my issues. This is a common thing that is a medical practice with the legions malingerers and sufferers of health anxiety who appear in the GP surgeries every week. It’s known as “referring on.”
And then there’s this…
The other thing that began to happen, and more so in later years after I began treatment for malignant hypertension was that the diuretics I was taking meant I’d have to get up in the night to pee, something I’d never had to do prior to the blood pressure treatment. The abdominal pain would start only after I peed (about 2-5 minutes afterward).
This is significant. Read on.
Herpes and finally hope…
The problem here is that herpes is almost always associated with cold sores to the face or sexually transmitted genital herpes. It seems that few people realise that it can actually have other sites of infection.
There are three type of herpes – herpes simplex 1 & 2, and herpes zoster. Whilst there are biological differences between these viruses, diagnosis is most commonly differentiated via the site of infection. i.e. infection to the mouth is called herpes simplex 1, infection to the genital is herpes simplex 2, and infection elsewhere is herpes zoster. But the reality is, whilst the generalisation is generally true, it simply isn’t that simple.
I had to deep dive into the medical literature to find any supporting evidence of this notion: The herpes infection is affecting the nerves to the transverse colon, causing initially a temporary neuropathy, and can cause a more permanent neuropathy.
In old parlance, it causes spasticity of the colon by semi-paralysing it.
Here is what else I learned which came as a bit of a surprise – herpes lesions can appear on the inside of the colon, not just to the skin. And if you want a real horror show, consider herpes infection to the oesophagus: https://en.wikipedia.org/wiki/Herpes_esophagitis
At this point my symptoms were constant: I had a stomach ache every night, was permanently constipated, had two skin plaques and permanently had small herpes outbreaks to my lower back.
Some of these outbreaks were very small indeed, some didn’t ever break through to the surface but instead remained a small hard pimple under the skin.
I began anti-viral treatment with acyclovir (800mg x4 times a day for 5 days) bought via online pharmacies (I have long since learned to stop bothering my doctor) and found that this brought rapid relief and a complete amelioration of the symptoms within 24 hours.
My tongue would clear, my breath was without malice and if I was herpes free for more than a month at a time, the skin plaques began to fade.
The problem is, despite having had an impressive effect, 90% of the time within days of cessation of anti-viral treatment, the abdominal pain at night would start again and within a day or two after symptoms starting up again, a small herpes outbreak would appear.
The acyclovir was not without side effects, mostly headache, which did not occur at lower doses. But lower doses were not so effective at eliminating the herpes outbreaks, especially when they hadn’t broken through to the surface of the skin.
I continued with intermittent herpes treatment for about a year or two, but as time went on, whilst the herpes outbreaks were increasingly managed, the abdominal pain symptoms persisted.
….dashing of hope and onset of peripheral neuropathy
What developed next was permanency to the nocturnal abdominal pain. Further deep dives into the medical literature revealed the following: herpes infection can cause a temporary or permanent neuropathy to a portion of the bowel.
Abdominal distention and constipation followed by herpes zoster infection https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3903839/
Herpes Simplex Proctitis Mimicking Inflammatory Bowel Disease in a Teenaged Male https://www.hindawi.com/journals/cripe/2017/3547230/
Acute constipation due to abdominal herpes zoster: an unusual association http://www.annalsgastro.gr/index.php/annalsgastro/article/view/1215/960
HSV1/2 Genital Infection in Mice Cause Reversible Delayed Gastrointestinal Transit: A Model for Enteric Myopathy https://www.frontiersin.org/articles/10.3389/fmed.2018.00176/full
This means that the movement of “matter” through the canal of the bowel is impaired, and gas can pool. Specifically here:
With abdominal gas collecting in these areas, increased pressure is exerted as the bowel is dilated, causing pain.
I’m purely guessing here, but based on what I understand of the medical literature on the matter, the choice of sites will depend on which of the bowel is affected by herpes.
I recognised that the pain is mostly focussed on the left lower abdominal (site 3 – beginning of the “sigmoid colon”).
A full bladder applies a counterpressure to the pressure in the sigmoid colon, hence why there is only onset of pain once the bladder is emptied.
Sites 1 (“the right hepatic flexure”) and 2 (“the left colic/splenic flexure”) are at the upper abdomen, and my very first onset of pain was focussed on site 1. I do not recall if I had any herpes signs at that time.
The Mission: restore bowel function, suppress all further herpes outbreaks
At the time of writing (February 2020) it is still early days, but I am pleased to report things are going very well and I am feeling healthier than I have done in over 10 years.
So, the plan: stop all further herpes outbreaks, increase motility of the bowel, reverse the neuropathy.
Increase gut motility.
I’ll spare you all the juggling about that I did and get straight to the solution I implemented. First off, increase motility:
- Ingest psyllium husk and a glass of water every time I eat something. To save on costs and to make it convenient to carry, I bought a cheap capsule filler and a big bag of psyllium husk from eBay. I use 000 size capsules (the largest) and take 4 capsules with every meal along with a glass of water.
- Ingest x2 capsules of slippery elm bark with every meal. As with psyllium, I buy the powder off eBay, and fill my own capsules.
- One capsule (again, self filled) of Triphala powder (also from eBay).
- I take x2 Sennakot tablets every morning (first thing, empty stomach), and one last thing at night. I found that senna does not work for me as a laxative, but it is well proven to increase gut motility and reduce inflammation. Again, good old eBay, I buy Sennakot in bulk as it is a lot cheaper. This has an additional advantage, as not all senna is the same, there are different species of the senna plant, each with different potency. So adjusting dose accordingly is easy when you have a large batch that is all the same. https://www.researchgate.net/publication/50834010_Anti-inflammatory_laxative_and_intestinal_motility_effects_of_Senna_macranthera_leaves
- If I ever eat snacks, no matter what, I will take a psyllium husk capsule and some water.
Note: owing to the fact that psyllium swells and is a soluble fibre, I always drink water with it. I avoid taking on other medications at that time, as the psyllium is known to also absorb that too and thus reduce the bioavailability of the medication.
Reduce gas in the bowel
When I experimented with the FODMAP diet previously, it didn’t really help, but it did noticeably reduce the amount of farting. So I now avoid my main triggers: peas, apples, garlic, anything sugary, milk, cabbage.
I began a herpes suppression regime. This is 400mg of acyclovir twice a day. This has reduced the outbreaks significantly, but I do still occasionally get an outbreak, in which case I begin a 5-day treatment of 800mg 4 times a day for 5 days.
If the doctor was sympathetic, I should be able to get a prescription for this. I have long since abandoned the notion of getting anything worthwhile from doctors regarding this issue, so I order my medication via a UK based online pharmacy that specialises in such matters. It works out at about £80-£90 for 2-3 months medication. The length of time depends on whether I use extra tablets to treat an outbreak.
I also investigated a more systemic approach and found some interesting data suggesting that persistent herpes outbreaks are [anecdotally] associated with low testosterone. https://www.apoe4.info/forums/viewtopic.php?t=4686
I decided to test this out and looked into methods for raising testosterone. As someone in his late 40s, I had recognised a few of the changes associated with age-related reduced testosterone, but had always attributed it to the persistent fatigue caused by insomnia: less energy, lower sex drive, no morning boners, lower motivation, lower moods and so on.
All of which can be associated with depression and/or insomnia.
So, I began to take the following cocktail:
- horny goat weed, 500mg of 5:1 extract, once a day.
- boron glycinate, 10mg, once a day.
- tribulus terrestris 10,000mg of 10:1 extract, once a day.
- D-aspartic acid, 1000mg, once a day.
- MACA, 1600mg, once a day.
- Magnesium (1000mg) with zinc (15mg) once a day
- Vitamin D, 10,000iu, once a week.
I took this for a week before I noticed anything happen. I broke out in acne and my skin became really greasy. I was hopeful that something was actually happening. And then at 10 days, I awoke with a boner. Something I’d actually forgotten about and something that is a well-known medical test for overall health in younger men (i.e. the lack of morning boner is a bad sign).
From that day I have felt completely different, my motivation is higher than it had been in years and my energy levels are back to how they used to be. All this alone has shown me just how unwell and debilitated I had been for so long. When it’s such a slow onset, I guess we just don’t notice it and adapt to it.
I’ve continued on my herbal testosterone raising cocktail and all the benefits have remained and the skin has cleared (that took about 2-3 months). Every four weeks, I stop taking these supplements for a week (so, four weeks on, one week off cycle).
Resolve the neuropathy
At this stage, I have managed no improvement in the neuropathy. What I know from my background in neurosurgery and neurology is that it is unwise to lose hope in the first 12-18 months of recovery, as neurological recovery does happen, and can take a long time.
So, now I have energy back I am able to exercise. I’m that guy who hates exercise but isn’t lazy. So I never use the escalators or lifts etc when I don’t have to. I walk the dogs, do a little strength training (too boring to persist too much with), some yoga.
Based on standard medical practice, I take a general b-vitamin supplement to add to my cocktail, and cyanocobalamin (vitamin B12) 500ug twice a day. I know it to be foolish to do this long term.
First Conclusion (Feb 2020)
It’s still early days, and I’ll update here as time goes on. But today I sit here having slept properly and had another pain free night. I poop normally. The joy of this last small detail is ridiculous to me. Again, it is a reminder of just how bad things have been for so long.
The comments section on this page is open. Trolls will just be removed and blocked, I’ve no time or interest in that. Do please share your experience, any tips and tricks you have learned along the way.
Please don’t use the comments section to bash the medical profession or give endless examples of how crap they can be. I want to focus more on what we can do about this problem rather than concentrate on the negative.
I look forward to hearing from you.