a “normal” colon: IBS, Hepatic Flexure Syndrome, Slow Transit

This is a normal colon:
CT colon hepatic flexure syndrome

No polyps, no thickness in the walls, reasonable unfolding of all the folds, no restrictions or obstructions, no cancers. Altough its path doesn’t look exactly like the text book examples this is a normal colon.

The doctor will say: “This is normal, there’s nothing wrong with you.”

What he actually means is: “This is within parameters, there’s nothing Very Wrong with you. However we must remind ourselves that this picture does not show its functionality in your normal life, when your colon is filled with food instead of air. But hey, no obvious problems!”

I’m glad that Very Wrong Things are ruled out.

I now look more closely at the picture and I think I can see why the owner of this colon wakes up in a sweat every night. At first I thought the problem was solely at the hepatic flexure. Indeed there is a steep bend, where the colon nearly folds into itself, that’s difficult to manouvre for colon content when the person is lying down.

But now that I’ve experimented for a few weeks I can with 80% certainty say that the problem lies at the beginning of the colon, right where it sprouts from the small intestines.

It’s a bit difficult to see but on the smaller scan on the right you see the person lying on her left side and when zooming in you can see how many bends there are in colon section right after the appendix:

CT-foto-colon-inverse

I inversed the image for more clarity.

From centre bottom going up diagonally to the right is the ascending colon: the folds stack up onto each other. Imagine food stuff traversing these bends. It will need the torso to be upright and move in various directions to create room to navigate this freely.

Theory:

this part somehow collapses when lying down. In the first stage of the night food gets processed by the small intestines (average time 4,5 hours) and gets pushed into this part of the colon. Where it gets stuck. The colon swells.

The large motility movement (BMM) comes by every 1,5 hours or so and cannot shift this food. 4,5 hours after the person lied down this accumulates into a stress reaction, waking her up in a sweat. Lower left abdomen tender and swollen.

Experiment:

avoid food to be there in the night. The person has been eating at different times the past few weeks and has been eating different foods too. Avoiding bulk, fibre and gaseous foods (because this is also the part of the colon where bacteria produce gas and gasbubbles easily block a colonic bend or fold). So that’s a low-residue diet plus FODMAP.

The timing has been important too: eat main meals before 2 in the afternoon. Or: “have dinner at noon.”

Drink a lot after 2 o’clock until bed time. Tea, broth. There has been snacking on low fibre things such as chocolates. A walk every evening is important because being upright and moving about ensures the foods in the ascending colon to move upwards.

Results:

have been satisfactory. Sleep has been longer than the typical 4,5 hours on more nights than ever before! Wake up is now typically after 6 hours (4,5 hours + one more BMM cycle) and most days in a sweat with a filled ascending colon but not too dramatic. It has been bliss! So much more gets done in a day on a 6 hour sleep than a 4,5 hours sleep. The person has Adrenal Insufficiency and can even lower her Hydrocortisone on those days.

Future:

get as many 6 hour nights as possible. Hoping to work towards 7,5 hour night but as of yet no idea how to accomplish that. More movement during the day is one route. Tips welcome.

Some Details:

On days that have dinner-at-noon there is tiredness after dinner. It’s the typical tiredness associated with digestion. After one hour there needs to be lie down for one hour for food to be processed by the duodenum. Resting is important to deal with CFS/ME anyway. Needs rest twice a day.

Protein is needed by 11 o’clock in the morning, especially Choline, which fuels the Parasympathetic Nervous System. Otherwise the person will feel weepy and wired at noon. I’ve got Choline pills and body builders protein powders as a back up.

When B12 vitamin is taken (in mB12 form)  Fosfatidylserine is needed a couple of hours later or pee will smell of ammonia, indicating proteins not being absorbed and used for repairs.

Testosteron is taken twice a week, together with some body builders proteins (l-glucosamine and casein), especially on the morning of a work out (fit20). Feeling very good about it. Strong. Together. Without any of these her muscles will not build. With them the muscles are actively in use when standing or sitting, she’s not merely “hanging off my skeleton” or using fat rolls to lean on. It’s quite a novel feeling and it feels appropriate.

The fibre equivalent of one small clementine is already too much fibre in a day and will cause insomnia. Nuts are being consumed though and but they have to be chew chew chewed.

The colon expert at the hospital said fibre is only needed for colon functionality. If the colon functions (i.e. you have satisfactory bowel movements) than fibre is not needed. Because the problem here is in the ascending colon food has not been dried out yet and hard pellet stools are not an issue. The low fibre diet does not cause very loose stools either. There’s a bowel movement once or twice a day.

I’m amazed at how sensitive the variables are. One clementine, come on!

There is one other thing as important for the sleep as food intake: dust. The bed needs to be changed at least once every fortnight and needs to be vacuumed every third night and sleeping clothes (including hats and scarves) need to be shaken vigorously out of the window every other day.

The last one stumps me. It needs to be both: food and dust. One of the two does not prevent the waking up.

One more detail: the CT colon shows a little bit of food matter left in the steep bend at the Hepatic Flexure. Indicating, because the patient had a very good colon cleaning before the pictures were taking, that this is indeed a second trouble spot in the colon. Food does get stuck here, especially when there’s air trapped. Avoidance of gaseous foods helps with this particular colonic problem. I’ve researched FODMAP and have understood the reasoning behind it (“what do bacteria eat?”). This allowed me to assess potential food items instead of trying to follow the list of this or that person/website.

  • As a rule: stay away from dietitians, they mean well but they do not know enough
  • as a rule: run from from amateurs/celebrities/people who’ve done a course/wrote a book about their experience. They’re in it for the money and their kick for saving humanity.
  • view your doctor’s opinions with some reservations. He’s knowledgable but he’s wearing horse blinders and has blind spots and assumptions (about you, your gender, your age and what “normal” bodily function is).
  • educate yourself. Sherlock the heck out of your thing.

Sherlock Holmes pic by Kevin on Flickr

Hepatic Flexure causes lifelong insomnia

I cannot believe that I did not figure this out earlier. It’s so logical, looking back.

Each night I wake up at 3AM. Wide awake. I lie awake for about 1 hour – 1,5 hr. Then I sleep a little but do not wake up rested.
Lying down = right upper bend in the colon gets squished. Matter cannot pass and builds up in the ascending colon. After 4,5 hours my body jolts itself awake from the stress.

4,5 hours being the bare minimum of sleep it needs to get by. Or the amount of time the small intestines need to process everything they’ve got and dump it into the colon.

I’ve had this insomnia as long as I can remember. Even as a child. My parents thought I was afraid of the dark or the house burning down. Every night I woke up. Always have.

Now that I’ve been addressing constipation and slow colonic transit the past couple of weeks I’ve had some succes  in sleeping through the night. Glorious feeling! Getting 6 hours instead of 4,5.

It makes sense now that I think about it: as I lie down the hepatic flexure gets squished (by the liver?) and matter cannot pass into the traverse colon. Stuff builds up in the ascending colon, especially in the 4,5 hours of sleep, and then I jolt awake because of the stress reaction. Lying awake for a good hour tossing and turning (making matter pass the hepatic flexure?). Perhaps I miss the train of the BMM (Body Mass Movement) that occurs every so often and one is every 1,5 hours?

I’m now looking into solutions for keeping that flexure open when I lie to rest. Can’t find a similar problem on the internet but I’m looking for clues at people who have a prolapsed traverse colon (colonic ptosis).

It is very common to have your colon twist and fold, both at the traverse colon (red) and the sigmoid colon (blue):

fig3-yee-ian-yik-2012

and these people (children too) all have slow colonic transit.

God knows how mine is twisted at the red part. All I know is when I lie down the traverse colon is no longer accessible. The life long insomnia as a result of this has caused adrenal problems and “ME”. I’ve fixed the latter and when I start sleeping though the night my adrenals will probably need less Hydrocortison as a crutch.

So what can I do? What do people with prolapsed traverse colon or enteroptosis get advised?

  • Surgery is out, not enough succes rate .
  • Defining stomach muscles is advised. (fit20 is an excellent regime for that. As is kettlebelling)
  • As is stomach massage.
  • As is hanging upside down (during sports) to let gravity help.

So what will I do?

  1. I will do more muscle exercising. I already do normal crunches on machines, both at fit20 and the gym. I will incorporate diagonal movements such as standing on a training ball and moving a barbell from left to right. Kayaking movements would be excellent too.
  2. I will do extra sets right before bed. Get as much matter out of the ascending colon as possible. Also massage these parts before going to sleep.
  3. continue mindfulness and supplements to enhance colonic motility (it’s still an issue)
  4. adopt a different sleep posture? It is related to me lying flat. Sleeping on my right or left or stomach does not seem to change much. Perhaps lie with head lower than buttocks? Head higher? Learn to sleep standing up, strapped to the bed?
  5. asking my doctor for advice about what I put into my mouth. Ascending colon specializes in taking out the moisture, perhaps if I can keep matter fluid it passes the hepatic bend easier? Is this where laxatives target? I have not used laxatives ever and I know they are not a lasting solution, if anything they can make matters worse. Usually fiber is advised to make matter moist but fiber works against my colonic inertia and gives too much bulk in the ascending colon at night.
  6. ask my doctor about enemas. Would that be good, cleaning the tubes once a month? My previous GP was against it because my system is so sensitive. He was often right.
  7. ask my doctor about anything else she can think of. Perhaps she thinks it fruitful to talk this over with a GI specialist? I dread going to yet another professional who deals with so many “special snowflakes” and patients who have dr.Google at their fingertips and somehow showing them that I indeed have a weird thing.

We’ll see. I’m meeting my new GP on Thursday. See if that goes better than when I met her replacement. I am preparing a medical dossier for her so she can see my casus in one glance. Everything on just one piece of paper.

PS in addition I still have classic “hepatic flexure” as described by my old GP. A bit of air forms in the colon and cannot pass the flexure. It clogs it up, preventing other mass to pass. I can solve this by lying on my right and letting gravity do its thing: the air squeezes past and rises upwards, into the traverse colon. I then turn on my back. Perhaps do my gymnastics.

I have to do this on top of whatever I have to do to empty the ascending colon.

 

Fixed the slow colon/ constipation.

So I fixed my slow transit colon and I now regularly use the toilet and deposit healthy, softish, stools in the round porcelain vault.

My clue was this: a scientific case where Crohn’s disease was healed by restoring the balance between gut neurotransmitters Dopamine and Serotonine.

In Crohn, it was assumed and proven in this case, there’s too much serotonin and not enough dopamine. Serotonine speeds up gut motility. By comparison I assume dopamine slows it down and this echoos my experience as a high dopamine person.

This is the scientific study: Amino acid-responsive Crohn’s disease: a case study. A patient of 22 years was healed just by taking in precursors to both dopamine and serotonin in a good ratio.

I mentioned this to my GP and he said that a regular side effect of Anti-depressants is loose stools. AD enhance the levels of serotonine. Serotonine is produced and used in the gut, for about 90-99,9 % of the bodily production.

So I set out to up my levels of gut-serotonin. For this I now take 5-HTP, a plant and precursor of serotonin. Currently I’m taking about 100 mg twice a day. I also stopped eating any and all fibres since I think my case of constipation is definitely not helped by adding fibre to hold the water. I’m better helped with relieving the digestive system of as many burdens as possible. No fibres, no vegetables, no raw foods, no nuts, no tomato skins et cetera.

I also apply the tummy massages I outlined in my previous post, both for the colon and for the Hepatic Flexure. And do the kettlebelling now and again.

I squeeze out lemons and drink the juice. (Acid stomach = better bile? Lemon juice relaxes the gut muscles? The increased salivation is important?  I know there’s a link between adequate saliva production and adequate adrenal function/stress resilience… I don’t know, it just feels good. I can’t say yet what is important in the palette of solutions I’m trying right now. Fresh lemons do seem important. Store bought lemon juice didn’t do the same for me.) I also take 1000 mg vit C. Sometimes twice.

Lastly I only eat proteins twice a day. I don’t eat any more after half past three in the afternoon. I believe the gut -or my gut at least- fares better with rests and pauzes. Not the constant bombardment of food morsels that the five-meals-a-day-brigade advises.

Those five meals a day are meant to keep your blood sugar level. I know other ways of doing that (see dr. Bernstein: eat nothing that triggers insuline nor any volume bigger than your stomach/fist. Or do a ketonic diet (but at the moment I’m enjoying my slices of white bread with lots of butter and just a hint of ginger jam too much)).

My gut has relaxed.

Suddenly my guts all fit into my pelvic bones. Everything is neatly folded up there. No bloating. I stand taller. Find it easier to sit up straight.

I have more energy.

I’m not sleeping through the night yet. But bodily stress has lessened. I have been sleeping 5 or 6 hours instead of 4,5. When I wake my guts want to move. I think they do not move while I’m asleep, it seems like they are waiting for me to wake. Or they are waking me. I need to do the laying on my right side to assist the Hepatic Flexure. It works. I can hear stuff moving and gurgling. I pass a bit of gas.

I have more energy.

However. The upped serotonine makes MAO A and MAO B work harder. This siphons away Dopamine. I have noticed that my ability to concentrate diminishes on days of high 5-HTP supplementation.

So I’ve taken a new supplement to up my dopamine while I do this experiment with serotonin. This supplement is called Methylphenidate, better knows as Ritalin. Ritalin causes the brain to produce more dopamine. I take 2,5 mg twice per day. Dosage for ADHD is usually 40 mg per day.

I had a big booboo with the doctor about wanting to try ritalin in this context. It’s a new GP, my trusted GP has stopped his practice to focus on orthomolecular science, specializing in the Methylation Cycle (!!!).

The new one didn’t understand one jota of what I was saying. Didn’t try either. All he saw was “a depressed housewife, looking for some happy pills”.  He thought I was on way too many supplements (didn’t bother to notice how low and tailored my dosages are). He suggested I exercise to battle depression. I’m not depressed. I already exercise. Fuck off.

I tried to steer the conversation into engineering territory, explaining how I approached this black box of a disease. How I had figured things out. How I had devised trials, to get more data. I mentioned Methylation Cycle and how messed up mine is due to faulty vitD and vit B12 receptors (I oversimplified things to get a common point of reference).

I asked him if he was familiar with the Methylation Cycle in the mitochondria, as part of the Citric Acid Cycle

All he heard was “Methylalalallablabla” and he proceeded on a rant about how way too many people take Methylphenidate and no one in Spain is taking it and here in the Netherlands everybody and their mum is shovelling pills, all because we want to keep up with Instagram and Facebook and things.

Yeah. It does have the same word in it, “methyl”. But I don’t think it means what you think it means.

So we parted. He did give me a prescription for Ritalin. He was reinforced in his idea that women my age are just sorry people looking for a quick fix. He never got to see beyond his blinders and see that in fact there was a smart engineer sitting opposite him, one with an interesting experience and an open approach to both life and health. Someone who he could have an interesting conversation with about healing and medicine.

Perhaps I’m a depressed housewife too, just like he assumes, I can’t say because I’m living my life from the inside out and have blinders of my own, but I know for a fact I’m also that smart engineer and he never knew.

The ritalin works. But it’s a crude dosage. I easily get hyper. It’s a nice feeling, for sure. I feel alive and productive and I want to dance and run. I do dance and run and try to change gears afterwards and rest (do that stomach massage while I’m resting).

I even started fitness. Powerlifting! Starting very slowly. I’ve been doing Fit20 since March and my core muscles have been build up precisely and with attention. Now I’ve joined a generic gym and do some cardio as warm up and cool down. In between I work on 7 or 8 machines, working on muscles and strength. It’s lovely! Endorphines ahoy! Lyn White from Reverse Therapy would cheer, I’m sure.

In a few weeks I’ll go work with the loose weights, barbells and such. Squat, Push up, Pull up, that sort of thing. It’s something I’ve always planned: weight lifting once I hit 40.

I couldn’t when I hit 40, I was too ill and weak. Now I’m 45 and I’ve started. Thanks to adequate cortisol replacement and now relaxed gut yielding more energy.

Still, I’ll be fine tuning the ritalin-dosage. 2,5 mg is too much in one go, I get too hyper. It’s the same kind of hyper I feel when I eat something fried in vegetable oil. It’s some sort of feverish greed. It feels as hippetyhop as having a little caffeine but with caffein I just get very chatty and fast-brained. With ritalin/vegetable oil I also get a feverish glance in my eye (and brain).

Estrogen-hype is different yet again. There it’s more Popeye-bam!bam! Rosie the Riveter. And lots of energy. I suppose its testosteron related. Of which I scored very low at the last blood tests by the way. I now have a DHEA supplement which converts into estrogen and testosteron, courtesy of your own body to chose how much of which. I do need more testosteron because I need to build up muscle. It’s a weird sensation to work my muscles in the gym but not have the building blocks to actually build them. Strange indeed.

For all HRT it’s: go low, go slow. So I’m just taking a little dab of DHEA every few days. In a few weeks there’s a whole battery of blood tests again. Before that I am to meet my new GP, a woman. I’ve prepared an introduction to my case. I won’t be hood winked by a biased GP again. I hope.

In the mean time: colon is happy! I am happy.

There’s more amplitude between activity and rest. The ritalin is a bit too high at the moment, I’m adjusting dosage. But it’s not so high that I get dopamine-excess symptoms such as head ache from tyramine rich foods (such as cheese). Although they do tend to come on sooner though but that can also be because I’ve been off tyramine for months if not years now. The system may have grown very sensitive (aka it’s not something I’m very worried about). The other day I had just a few organic corn chips for their salt content (It’s a heat wave over here! I’m very vulnerable to heat wave I found out.) The corn chips were made with olive oil (which are not the vegetable fried oils I meant earlier, those are from commercial shops and fast foods) and I got a splitting head ache afterwards. Olive oil contains tyramine. Same with Mascarpone cheese.

If I get the highs and the rests a bit more under control I’m hoping the sleep will follow too. I now -again- have come back to the notion that sleep is made during the day, just like I learned in the sleep study and the psychologist that helped me as part of that. Relaxing, mindfulness, during the day pays off at night.

I experiment with foods but most make me tired. I long very much for salad and sprouts and I eat them in small quantity. But mostly I eat a slice of white bread with lots of full fat butter (Demeter quality) and a hint of jam. Or a thick slice of white bread (artisanal bread, without sugar. Just flour, water, salt and yeast.) with four or five egg yokes on it, warmed in coconut fat. (I won’t say fried because I like to keep the yoke runny.)

I have a piece of chocolate, 75% or more cacao. But only one or two small bits in a day because I’ve noticed it kicks my adrenals and I will lie awake when chocolate was consumed.

For dinner (at 3.30 AM) I have drumsticks or a piece of steak or 150 grams of minced meat with tomato juice and spices. Or fish with creme fraiche.

I also eat pancakes, with jam or slices of apple. But only one or two a day. Instead of slice of bread or dinner. As a pick-me-up I drink decaffeinated Earl Grey tea with unwhipped cream or full fat milk.

Overall I just don’t eat that much, in volume. I do eat enough in calories, what with the butter and all. I have gained some layers of fat in the past few months. These will disappear now that I’m more active. I’m not worried.

I have found that ritalin/dopamins will keep you going and will take away the desire to eat. This can be a seductive tool in the hands of someone who’s not level headed. I know I have an addictive DNA-characteristic and I feel the appeal. Reverse Therapy keeps me grounded in what’s important. As do the physical activity. I need to go out every day, every morning, to move and to clear away the toxins and cobwebs that have accumulated in my body and mood. My body is helped by mB12 and Phosphatidylserine. I need to pay attention to clearing the junk away properly, now that I’ve kickstarted the methylation process and am egging it on with the ritalin.

So these are interesting times for me. I’m deadly afraid I’m wrecking something and for this I’m monitoring my body all the time which is not good, in terms of relax and trust (Reverse Therapy primary points). I take comfort from the knowledge of and my experience with “Go Low and Go Slow” which has always worked for me up until now. I find that I seldom burden my body beyond what it can clear away in a day. Now that the gut/colon is falling into this rhythm too I get more and more confident. Confident that I am a friend to my body.

I wish my former new GP read this. We could’ve become a team.

 

the cause of my 3AM-5AM insomnia

I have this typical insomnia:

  1. fall asleep easily
  2. wake up at 3AM
  3. lie awake for about two hours, being wide awake, very alert

Upon examination there are a few characteristics to consider:

  • I wake up sweaty, with a heated body. I can’t go back to sleep unless I cool down. This points towards some sort of stress reaction my body is having, causing me to wake up.
  • The mental alertness is ridiculously high. It’s like I have a pinball machine in my head. It’s not anxiety, it’s more a superability and -willingness to solve a problem. This is a dopamine excess.
  • The 3AM is not 3AM. The insomnia occurs pretty much precisely 4,5 hours after I fall asleep.

These three things: stress reaction; dopamine excess and 4,5 hours interval have now led me to the cause of my insomnia. It has to do when the internal workings of the machine trigger the neural wiring which reacts violently.

A small intestinal problem triggers my overexitable neurotransmitters.

It takes 4,5 hours for food to traverse the small intestines. It then enters the colon. There, in my case, it remains. It doens’t travel up the ascending colon because it cannot make the curve near the liver (there’s probably an air bubble blocking the way). Food keeps being piled on and the right vertical part of my colon expands, causing stress, waking me up. Since the enzyme that’s supposed to break down stress hormones is broken in me, the MAO A enzyme, my levels of noradrenaline (=norepinephrine) and dopamine are getting very high. Causing me to lie awake for 1,5 to 2 hours, frantically  writing speeches on Important Subjects. During this time my cortisol is depleted and my growth hormone doesn’t get the time of day (I’m robbed of a significant portion of REM sleep). This is a large tax on the body and leaves me with diminished capacity for getting out of bed the following day and healing properties, especially now that I’m over 25 and my endo-glands can no longer make up for such a plundering.

There we have it. A simple blockage leads to a build up in the right colon which makes my body cry out. Triggering the release of too many excitable neurotransmitters.

Again it’s the imbalance between Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS), which both have so much to do with the perifere location: the gut.

My balance is skewed in favour of the SNS due to a homozygous mutation of the MAO A  gene and a life time of training to be in Fight or Flight. I can unlearn the latter. I can only influence and work around the former.

Gut motility is mostly governed by PNS. It’s the modus of Rest & Digest in opposition of SNS’s Fight or Flight. Looking at particular neurotransmitters I’ve now learned that as soon as dopamine rises the stomach is reluctant to release its content. This is why a dopamine-antagonist (Domperidone) is prescribed to people with nausea and vomiting (Dutch link). And this is why I have to go lie down about an hour after I have ingested food. The stomach takes 45 minutes to break down the first bites I took and is now ready to release it. I need to make room for PNS to do its thing and the only way I know how to at the moment is to lie down and relax. As soon as I do so my upper GI tract starts gurgling. If I don’t lie down I’ll grow weary and moody as the day progresses and I’ll be devilish in the evening and have hellish insomnia at night.

Motility in the small intestine is dependent upon having enough of the PSN neurotransmitter Acetylcholine and by activating lots of serotonine receptors. Having bad MAO A is a good thing here, serotonine is soaring and there should be one for every receptor. As soon as I lie down at night the small intestine starts happily motoring things along. In 4,5 hours it has emptied all it had into the next portion of the gut via the one way ileocecal valve into the colon. Luckily I have no problems there. For some this valve flutters and lets stuff and bacteria creep back into the small intestine.

We’ve all seen the picture of how the colon lies in the belly:

The colon rises up, all the way to the liver, then bends to the left, traversing in front of the stomach exit to the spleen area. There’s another bend downwards and then it ends in the temporary holding station called Sigmoid Colon.

Which is true for only about 5% of humanity. In most of us the colon is going wherever it wants. Diagonally to the spleen. Bending backwards. Bulging inwards into small intestine territory. So don’t take anything for granted, these idealistic pictures are just theory.
This colon is more likely:
 pic by Glitzy queen00, radiographer in the UK

I don’t know the route my colon lies. I can feel contents at certain places so I have some idea. But I suspect at the Traverse Colon things are iffy. Interfering with the stomach exit and the duodenum, where also the major PNS nerve is located, the Nerves Vagus.

At the right bend, the Hepatic Flexure, its location is probably irritating the liver. I often have a heavy feeling there, bordering on pain. And now I know that something is hindering process in the night. My GP suggested a mechanical issue: an air bubble is trapped in the Hepatic Flexure, preventing passage. He made the analogy with a bottle with air trapped in it: you can’t pour the liquid in a smooth motion.

I can work with mechanical problems. The solution is to lie on the right side. The air travels upwards, into the Traverse Colon. I’m using breathing as a motion device, the expanding and contracting lungs are the main mechanical force on organs, making them move and shift. It’s a natural thing. A good thing.

When I had an echo done of the liver I had to breathe out and hold my breath. The lungs forced the liver to peek out from under the ribcage and the technician could scan it.  It looked so beautiful! Things were moving and fluids were flowing and we saw all kinds of channels. It was such a marvel. Movement through breathing is very good for the internal organs.

After 5 to 20 minutes I turn on my back. I now lift my pelvis to the roof, resting on my feet and shoulderblades. This is a trick I learned when I went in for a pap smear and the cervix was not there. Somehow the uterus had shifted or folded back and hidden the cervix out of sight. I was asked to do these gymnastics so it may shift to another position. Mechanics. Everything shifts in there, nothing’s stationary. Organs are lying next to each other and are all able to shift and move.

There’s an excellent system in pace to allow for these movements. It both secures the internal organs to the scaffolding (the skeleton) and it lubricates the surfaces so there’s no chafing. It’s the Mesentry, a thin layer of epithelial cells surrounding all organ parts, like pieces of clingfoil taped to the back wall at various points:

 pic by blumdesign.com

The architectural structure of the mesentries is amazing, with small gutters transporting the fluid all around. Breathing and moving and muscular movements aid this system. Go check out non-profit educational site The Radiology Assistent for excellent images and explanations of many internal organs and structures.

I’m still on my bed, pelvic to the sky. I’m again using my breath to move things along. When breathing out I can manually manipulate the downwards colon on the left side a bit, trying to help it transport the air bubble to the exit. After just a few minutes I’ll feel the need to pass some gas. It’s only a little bit and I cannot believe that this is actually the bubble that was stuck at the Hepatic Flexure. But I have a result and I’m glad with it.

I now do this in the evening, before I go to bed. And during the day, when I take my hour rest. And at night, should I wake up. My insomnia is less severe because of this, there’s less dopamine produced. I still lie awake but now I’m a docile book, not a screeching video game. I have reduced the stress reaction. But I have not eliminated it yet.

 pic by amazon

I’m looking into a better motility of the colon. It’s not only air in the Hepatic Flexure, I’ve also noticed slow transit in the Traverse Colon. Then there’s considerable build up in the Sigmoid Colon to examine. And there’s a lack of neural signalling that I need to go, either #1 or #2.

Then there’s the food I eat that influences bulk, consistency, roughage and gas production. I already know to stay away from onions, beans and whole grains. Also carbohydrates make for a more severe insomnia, especially potato products. Which lead my GP and me to assume glycemic problems almost 15 years ago when I entertainingly mentioned how a potato dinner would keep me more wide awake at night than other dinners. Having been down the whole blood sugar route I can now say this is not an issue. But experiencing an insuline peak during the day does trigger the SNS for which I pay during the night. So sugar is still bad, but for a different -and far more serious- reason. Insulin is a potent poison, it should be engaged very prudently.

There, I’m done for today. There’s a lot to be sorted. Especially learning how/which neurotransmitters dampen the motility. Looking at you, dopamine. How to enhance the numbers for Acetylcholine? There’s a loop into the Methylation Cycle there that complicates things. There are probiotics that can help with signaling for defeacation. And how I can give PNS more time of day? I’m already grumbling that I have to lie down for an hour trice a day. But I gotta keep that pinball machine chilled if I ever want to sleep through the night and reap the benefits of both cortisol and growth hormone the following day.

A few more things to park here for future pick up:

1. Strengthening the gut muscles is a separate avenue to travel. One that works well for a lot of people, including a lot with Irritable Bowl Syndrome (IBS) (this is a link with the best instructional video for swinging a kettlebell). I’ve started kettlebelling which is a fun thing to do. I keep mine in the kitchen and kettle the bell a few times while I wait for the tea water to boil. Nothing on a schedule, no counting, . Keeping it fun. I already notice that there’s a certain pleasure in keeping your body upright using the core muscles, instead of stacking all your organs on top of each other and leaning on them. Sitting upstraight on a chair, like I was a woman from a 100 years ago, is pleasurable. Standing straight too. I’m stacking vertebrae instead of organs.

2. The stretching in the ascending colon activates trigger points causing sympoms. They are the reflex zones of the colon:

reflexzones dikke darm

The symptoms that occur at night in my insomniatic period are all noted in the reflex zones of the ascending colon: irritated and stuffed nose; oversensitive sense of hearing (fear triggering); strained eyes; soar throat and tonsils; extra pain in my right shoulder impingement. I have no issues with the other organs noted in this picture, apart from bladder and uterus which are at the sigmoid end.

These symptoms, especially of the allergy kind in tonsils, throat and nose, have thrown me off scent for the longest time. I kept thinking it was dry air or dust mites that kept me awake at night. But it’s the other way around: only if I wake at night dry air and dust mites become a problem. If I sleep through the night they don’t bother me.

3. pH in gastro tract.

4. osteopatic views on movement in and amongst internal structures. Link in Dutch.

5. the various types of motility in the intestines. one link and link to Flash card notes.

6. duodenic colic reflex makes you want to go #2 when the stomach fills up.

7. MAO A influencing when it’s already bust. Progesteron; B2; Ginko Biloba. Progesteron!

and to be perfectly clear: for years I’ve researched all the usual suspects for insomnia. Blood sugar; glycogen; sleep hygiene; circadian rhythm; melatonin; dual sleep; Chinese organ clock; you name it I’ve looked into it. It has done nothing. I could have guessed since I’ve had this sleeping pattern all my life, through every stage of health and constitution.

This now is the first approach that ticks all the boxes, explains everything and gives positive preliminary results when I tweak the dials that are involved.

For other people experiencing this type of insomnia I suggest assuming your body too is experiencing some stress reaction and figuring out what causes yours. I doubt it’s the same colonic issue I have but it might be. Especially if your MAO A gene is faulty you’ll recognize the alertness of your insomnia. This is separate from what causes the stress reaction. But if you are homozygous for MAO A then your dopamine is too high and interfering with stomach emptying and colon motility.

Reverse Therapy: recovering from ME/CFS

Had my first session last week, a Skype session with therapist Lyn White in the UK. This works.
It’s the way to keep the body (autonomic nervous system) out of Fight or Flight. I’m no longer wired. Instead I’m relaxed, chill, happy. Without pain, without tiredness.

I’ve just spend four days on a road trip and a midwinter wool fair. First day I drove for hours and hours. Second day I stood on my feet in a wool booth and talked to people for 7 hours. Third day the same. Fourth day drove back. All the time was spend with a friend, I was seldom alone.

No crash, no pain. No worries, no strain.
This is unheard of.

I did have my usual insomnia (and then some due to mosquito bites) in the night but I performed wonderful all of the days nonetheless.
I was not overly sensitive to noises, smells or the presence of my friend.

Back home there has been no crash. There was tiredness, of course. There were bouts of head aches because of all the impressions and things I’d seen. A bit of a hoarse throat because of the unusual amounts of talking. My feet tingled.
But I’ve been so cheerful all these days! And the days after, here, back home.

Reverse Therapy and Mickel Therapy are what works for me.

I’m not going to talk about their medical opinions about what ME is. Just know that both therapies give a tool box to keep the nervous system calm.
And whatever their, mine or your own theory is about the relation between nervous system and ME/CFS, keeping the former calm helps to alleviate symptoms of the latter.

I am VERY GLAD to be back in the calm again. I had lost it when life stresses hit us in January/February of this year.
(I had found it in the course of the years I spend at the cabin, alone. Well fed, warm and finally without that stupid ambition. Once I did Gupta Amygdala Retraining I was without symptoms too but the calmness hadn’t ingrained. With Reverse Therapy it has.)

For the past few months I tried DIY Reverse Therapy, having read all the things that have been written about it and understanding its principles and its ideas. But it was not the right way. Having a coach is much more efficient. Because my twittering brain is always trying to keep on top of things it kept getting in the way of actually applying Reverse Therapy. A chatterbox in the head is precisely the thing the nervous system doesn’t need.

Long story short: a whole new world has opened up to me. I’m calm and am experiencing bouts of happyness from the very core of my bones. Symptoms are dwindling. I’m without worries. I had a wonderful weekend with my friend.
I’ve started dreaming about (and planning) holidays.

Reverse Therapy and Mickel Therapy are precisely the thing I need. On top of all the other things I’ve learned to do over the years to support my body:
– take vitamin D because of where I live on the globe
– take extra vit D because my receptors are wonky
– dabble in mB12
– keep levels up from minerals Zinc, Lithium, Magnesium, Molybdenum, Selenium and Iodium
– avoid cruciferous vegetables (onions, kale, garlic etc.)
– supplement hormones I lack (Progesteron, Cortisol)(all body identical in physiological doses)
– supplement Progesteron to counter Estrogen highs during the cycle
– avoid blood sugar spikes and stress and practise sleep (restriction) therapy to sleep through the night
– avoid foods difficult to digest (boiled egg whites, raw food, nuts, leafy vegetables)
– avoid foods that “feel bad” (vegetable oils, caffeine, sugars, fried foods, vanillin, commercial chicken and vegetables that never saw soil or sunlight)
– avoid tiresome people or learn how to deal with them without investing energy
– rest flat for one hour, one hour after the last bite
– eat small portions
– aid the acidity of the stomach with HCL
– aid the lymphatic system with stretching, yawning and lots of full fats (butter, coconut fat, fatty animal tissue)
– keep the nervous system relaxed (Reverse Therapy, doing fun things, be cheerful, having cups of tea, dancing in the living room, cuddling the cats)

What else?
With the cortisol pills and the managing of my own stress levels I can tune the immune system a bit and have it be extra vigilant at times when I’m surrounded by lots of “germy people”.
I have gotten only one cold since I fell ill in 2008. And that cold was when I was severely stressed because I wanted to go on a cross-Europe train tour. Extra stress = extra cortisol = suppressing of the immune system = invitation to opportunistic viruses and bacteria.

And finally: I’m a firm believer of practising Mental Hygiene. You are not obliged to think what you think. If what I think makes me feel bad (worry, disaster scenario, reliving bad memories, focusing on bad aspects) I can and I should correct myself.
Think of something else. Anything else. Think of ants. Think of blue things. Think of the fun thing that happened the other day. Go watch David Armand mime the lyrics of Queen’s Don’t Stop Me Now.
There is no thought police in my head, I am free to think about something else.

 

PS I’m listening to a Norwegian podcast. For the first time since I fell ill. I can now listen to Norwegian again without feeling sad :)

As a result I’ve just started thinking about visiting that country again too. I can’t say this feeling will stay. I can’t yet claim I am in recovery. But I sure am happy and healthy, right this minute.

update 1 november: six months of recovering from ME/CFS

Today is six months after the first day of my leap in recovery. This is an update on how I’m doing. Because I am doing well!

For me, recovery suddenly started on the first of May when I started to take 100 mg of body-identical Progesterone (not “the pill” or your typical HRT but the daily dose of bioidentical Progesterone that all human beings need, regardless of sex or age) daily and lowered my chronic bodily stress overnight by stopping the constant worry about it (through Gupta Amygdala Retraining Program).

This leap in health was possible because I had set the scene: my digestion track was in optimal health after years of no vegetables, no sugars and no grains. In those same years I had managed to shed some of the toxins that had build up in my cells during a lifetime (due to DNA damage to the normal waste disposal processes) and I had supplemented all minerals to sufficient levels.
I had also learned to take two horizontal rests every day, to facilitate digestion and to let my nervous system experience rest and calm. (get out of Fight or Flight and into Rest & Digest).
On top of all this I had reduced all life stresses (work, noise, mother-in-law, social gatherings, having to make decisions and choices all day) and I was supplementing two hormones I do not have enough of at the moment: Cortisol and Progesteron (the sex hormone. Not the basic building block all humans need that I reference in the first alinea). I supplement these two according to symptoms and time of month.

Recovery in the last six months has been steady and continuously and today I live bussier days and get more things done while maintaining a calmer mood. My house is cleaner, I’m better fed, better clothed and take showers more often. I go and visit friends. I drive my car more. And I’m thinking about working again.

And it’s not easy, being in better health.
I now realize that besides the hardships of being ill it makes for pretty easy days, when you’re very very ill. Your priorities are few and pressing. There’s getting out of bed. There’s getting food and keeping it inside. There’s trying not to crash. There might be some washing of bodyparts. And then there’s getting back in bed again.
All other things fall from the plate. No need to spend a thought on them. That’s easy living. Bleak but easy.

(Not that being ill is easy. Besides the practical difficulties there’s the disappointment and despair and frustration to deal with. Not an easy task by far.)

Being in better health piles up opportunities to fill the day. I have great difficulty sifting through them, deciding what’s important. Often I’m knackered from the contemplating and choosing, not even from doing.
I had not counted on that.

The other thing that surprises me is the emotional luggage that’s come tumbling off this vehicle now that I’m gathering speed. There’s all kinds of things emerge and need to be cleaned up and repaired. Things like my lack of basic safety or coming to terms with the nonsense of the world and of life and of time.
I wonder if I had stowed these issues away while I was so ill, just because there was no reserve to deal with them at the time.

Now a summary by subject:
FOOD
I still eat chicken soup as my main staple. Two or three times a day. It’s home made stock, I make it once a week. Fatigued people can make it too because you can take many breaks in between the preparation.

recipe ME chickensoup

needed:

  1. chicken (whole chicken, with bones but without intestines, feathers, feet and head. PReferably organic. Can be a mean old chicken)
  2. stalk celery (preferably organic)
  3. ginger (big piece, as potato-like as possible. Gnarly ginger is tiresome to skin)
  4. vinegar, salt, pepper

utensils:

  1. large pot. 5 litres?
  2. small plate
  3. paper towel
  4. colander
  5. cutting knife
  6. schuimspaan
  7. perhaps scissors to cut the celerytops and perhaps oven mitts if the top of the pot gets too hot. A chair to sit on.

making the soup:

  1. fill a large pot with water (luke warm of cold), add a lot of salt, two large glugs of vinegar and the chicken (don’t add the pepper yet). Put it on heat. Go lie down.
  2.  chop up the celery (by scissors or by cutting on the small plate) and put them in the colander. Go rest.
  3. rinse celery in the colander. Leave in colander in sink.
  4. cut up the ginger on the small plate. Small enough to eat in a spoon of soup. Put the ginger on top of the celery in the colander. Go lie down.
  5. Place the paper towel on top of your small plate.
  6. open the pot with the simmering soup. See if there’s any scum rising to the top. Scoop that away with your scoop and dispose of it on the paper towel on your small plate. Repeat this process untill almost all of the scum is gone. This scum is white or yellow or brown froth. It consists of nasty big molecules of protein that your body doesn’t like. It’s not fat. Fat is good.
  7. When the scum is mostly gone tip the colander in the pot. Add pepper. Put on a simmer and leave for a couple of hours.

 

The gelatine in the soup is the main health benefit. And something warm. And fat and some protein. The ginger facilitates digestion as does the vinegar. The salt is very important for the adrenals and for the low blood pressure.

I keep the big pot in the refrigerator and take out small amounts that I warm up on the stove in a small pan. Just two big scoops, enough to fill a small bowl. This is my break fast and my dinner.

At lunch I eat chocolate ganache and whipped cream. Once a week I eat fish, I make a stew of it with zuccini and koreander (again a gelatineous dish).
As I am more physically active now I eat more carbohydrates: apple pie; commercial chocolate figurines and salted chips (crisps if you’re British). I also eat chips once in a while (fries if you’re American). Sushi once a month.
Oh, I should tell you about my MarvelSushi!

recipe Marvelsushi

  1. place a slice of roastbeef on a plate
  2. sprinkle salt on it
  3. add a slice of pickled ginger
  4. add wasabi
  5. add a third of your finger in full fat butter
  6. roll up. Let it come to room temperature. Enjoy.

I take care to choose ginger and wasabi (and meat) with no additives. The ginger has a bit of sugar in it but that’s ok.

So still I don’t eat a lot. That’s ok because digestion takes a large portion of my energy and I’d rather use it for something else.
I’m also convinced human bodies are better off without carrying around a pound of food in their tummies. I have no bloating and my belly doesn’t hang over my belt. I’m not skinny either, oh no. And I’m never hungry, except when I’ve snacked too much or too sweet. Right there is an illustration of dropping blood sugar that rose too high. I probably got my insuline flowing than and am storing fat. (it’s what happens with the “food coma” people sometimes mention) I try and sit out these rides. I go outside, have a look around. But whatever I do, I try not take another bite. (I don’t always succeed)

My poo is excellent. Small dark marbles, all soft squished together. A sign my bile is flowing and digestion is good. I aid my bile with HCL during meals.

Sometimes my belly hurts. It’s any time I eat something with vegetable skins (oats, nuts, seeds, vegetables). I get bloating and it really hurts. It will easily take a week for things to settle again and during this week I’m tired and sluggish. This now has made it easier for me to stay away from these food stufs.

AGING
I’ve noticed I’m entering middle age. My belly skin is getting that papery fragile look. If I eat more calories than I use up it settles in little soft bags on the side of my upper legs. If I don’t eat enough protein my muscles grow weak and my hip starts to hurt (also if I don’t take enough magnesium supplement or have had too much dairy products)
I finally got a set of glasses that addresses both my double vision and my need for reading glasses.

I know I’m entering middle age not because I need reading glasses but because I settle for “good enough” instead of optimum.

SLEEP
I sleep better now. After all these years!
I’ve participated in a sleep study. It ruled out sleep apneu, snoring and restless leg syndrome as causes for my insomnia. They could not explain why I lie awake and have done so all my life.
They did establish that I do get through all sleepstages. That’s good to know. I did get to REMsleep after the bout of insomnia which is a bit weird because usually you wake up after REM and before you dive back into another cycle.

I’ve gone into Sleep Restriction Therapy because it’s an effective therapy although experts don’t know much about sleep or why it’s helping. SRT is all about restricting the time you spend in bed so your body realizes it better utilize that time and sleep. I go to bed at half past ten every night and rise at half past five.
This is a harsh therapy and should not be done by anybody suffering from full blown CFS.

I started it over the Summer when I had time during the day to be sleepy. (Didn’t take any naps though, that’s part of the therapy).
Whatever the results, it taught me that sleep is malleable. Pliable. And has much to do with your every day state of mind.

I don’t sleep through the night. But I might.
Whenever there’s a mosquito or a snoring husband or a whining cat or inconsiderate people outside I’ll wake up and have my usual insomnia for an hour and a half. Then I go back to sleep.
Also when my body is out of sync (because I overdid it or have eaten wrong foods and upset my stomach) I’ll lie awake.

However, when my intestines are fine ànd I am calm and peaceful then I will sleep through the night. And my bed/my body needs to be clean and of comfortable temperature. (dust, dust mites, kelp, thyroid)
I’m no longer trapped in that fixed rhytme of 4,5 hours sleep, 1,5 hours awake and then a couple of more hours of bad sleep.
Things are pliable. Sleep is pliable.

I’m continuing with the restricted sleeping times. My light goes out at 23 hours and my day starts at 6.30 hours. It seems I’m someone who does better on fewer hours of sleep. 7,5 hours are good. Longer makes me sluggish. But I’m not sleeping all night every night. I’m still in the process.

What I hadn’t reckoned on is the importance of emotional state on sleep.

EMOTIONAL STATE
I had early on realized part of my chronic tension and my insomnia had to do with not feeling safe. Not in the world, not in my body.
The Sleep Therapy Psychologist gave it its name: lack of basic safety (“basisveiligheid”)
With that I found a psychologist’s world of knowledge to explore. I’m summarizing what applies to me, not others:

My lack of basic safety has lead to an unhealthy way of attachment (“onveilige hechting”) meaning I’ve resorted to living strong and aggressive and not needing my parents. I’m alert all the time and have emergency plans and contingency plans for every eventuality. Also for every absurd eventuality like a meteor coming crashing in or a long time neighbour suddenly drawing a gun and going berserk. I’m prepared for worst case scenarios. Living like this takes a lot of energy (hence adrenal exhaustion in later life)

I’ve done EMDR to deal with the hurt and grief of the baby that missed out on feeling safe. EMDR is amazing! My GP marvels that it’s the only therapy that works and he explains it likes this: you occupy your working memory with the clicks or the visuals while you revel in the (dire) emotions of the trauma. The brain cannot facilitate both processes and somehow dampens the emotions in favour of the occupation of the working brain.
I did it on my own, sitting under the tree. I watched my thumb while I moved it in front of my eyes. Then I went into the emotion. It was not nice to be in the emotional place of that baby again. Not nice at all…
But I had faith in the therapy and after a couple of minutes I felt the grief and desperation lessen. The whole process took maybe 15 minutes. It was hard.

After that I could look back at that babylife of mine and new thoughts found room to blossom. Thoughts about my parents, how much it must have hurt them, not coming to my aid. Thoughts about how clever that baby was -and its body- to come up with a solution to survive in spite of missing that basic premiss of all good living: being at home in your body and at home on the planet.

Having dealt with the emotional side of things I wanted to connect with the subconscious and/or nervous system side of me and install that sense of basic safety. I think it will bring my nervous system much ease and calmness. Processes will run smoother.

Not wanting to go to think/talk therapy because I’m too clever in my head I looked for ways of connecting to the subconscious that didn’t involve psychotherapy or the rational approach.

The Sleep Psychologist proposed Motoric Therapy. He explained what it was and it send me screaming for the hills. “A therapist will slowly close in on you and in the end he will hug you.”
After some research I understood why this idea makes my skin crawl: it is contra-indicated for people who are negative attached the way I am. It will make things worse.

I proposed Hypnotherapy.
I felt really ready for that. I found a therapist and we clicked.
But unfortunately she didn’t deliver what I had hoped. Not knowing much about this kind of therapy I had asked her to instruct my subconsciouss it is safe. My subconscious loves an authority figure and any instruction echoing the truth would be welcomed.
But the lady has not done so. She was afraid it might skew my assesment tool for general safety. She had an example of a man with diabetes who felt so safe he stopped taking insuline.
Clearly I had failed to explain on what plane my problem is. Preparing for unprobably meteorite crashes is something else than denying existing illnesses.

Instead she guided me on two trances, with strong shamanic colouring. This I can do on my own easily. Effects did not linger and it was a waste of expensive money. :(

A friend brought Body oriented therapy to my attention.
That’s where I’m at now, I’m working through the book of Levine.

AUTISM
I was up for diagnose at the Autism Centre in Utrecht that specializes in Autism in (adult) females. But after reading the surveys I can tell I’m not in the middle or the extreme of the spectrum. I have traits of the start of the spectrum for sure. Even traits I did not realize where indicative such as pulling on my eye lashes which will calm me down.
However I decided not to pursue a diagnosis with them. For one the treatment they offer solely consists of explanations of Autism and courses in Mindfullness. Both of which I do not need from them.
Secondly, the survey that a close friend had to fill in about me was horrible. The words, the atmosphere. Awful.
Thirdly, I don’t have a close friend or relative who could fill in questionaire …. no one has spend enough time with me in the last couple of years to be able to answer their questions. Which were horrible anyway and wouldn’t want to expose my friends to.
“When you come and visit the female, does the female offer you something to drink?”

I spend time at AspergerExperts.com and learned a bunch.
Good site.

I concluded my “autism” is malleable. I don’t think it’s ingrained in my brain structure. I think it’s more in the software: in the neurotransmitters and in the hormones.

HORMONES
I think I had an encounter with perimenopause…. Twice. Got my period a whole week early, twice. This has never happened in 10+ years (and I’ve been tracking!)
First time was after the EMDR/emotional week. Might be connected to that.
Second time was after an amazing weekend at a retreat with the Dutch National Wool Spinners Guild. I met all my friends, had a lovely time, extended my stay, drove to and from the venue myself, ate weird things.
And afterwards, I’m a little bit ashamed to say, I did not take to the couch.
Instead I embarked on a full week of spinning wool which requires me to sit up straight.

Lots of people get ill after these weekends. Little colds flare up. Exhaustion. People need a pyamaday. So it’s to be expected.
But getting my period… I was not pleased. Because I dread perimenopause.
Oh well.

Otherwise I’m handling my hormones acceptably.
It is hard though. I can’t take anything I feel seriously. Any feel of dread, doom or despair is hormonal in essence. I have to weather it. Keep breathing. Don’t try and solve it.
The one thing to do is to get physical active. That will aid the body in levelling the board.
But it takes willpower to make it happen, physical acitivety.

LIFE
Trying to keep an emotional balance in spite of fluctuating hormones and experience how I’m basically safe and also something another person might call mindfullness nowadays I’m thinking at every turn: “I am here. I am now.” It helps to be (in) my body. It helps to see en enjoy the things around me right now instead of the things in my future where my mind usually dwells.

Often my thoughts and my feelings stray away and I see how life unfolds, how things are, and I feel sad about things we are losing. Species, spaces, traditionals, stories.
I try to turn my thoughts around, focus on here and now, on the wonders that surround each of us in the here and now. Hoping my feelings will follow.
But it’s hard.

The mind keeps predicting what will happen. We will get more traffic, more people, more houses.
More people will escape into their monitors and game devices and enjoy a mental life online or emerged in games or documentairies.
I will grow old and loose more of my bodily abbilities and one day I’ll end up in a facility where other people will determine what I eat and when I eat. Overthrowing my optimum diet.

I see that’s how we live. And that’s ok. We live mediocre. People in extremes

I see how people fill their lives. How cat fill their lives. It tells me something about the essence of life. The essence is not getting a goal.
the essence is in being in the moment. Experiencing the and through the body.
but words fail me. And I don’t want this to be al sagy and life motivating and atracking more people who make money by getting followers online and dishing out life wisdom in one liners.


JOB

These six months were meant for me to flounder around. Do nothing. Enjoy the day.
That has been a hard task. I find it hard.

Especially now there’s more room in my days, in my head, to do something. Suddenly having a job is back on the table.

I’ve been thinking about it. What kind of a job. What would suit me. I dabble in some activities. Fell flat on my face because ambition creeped back in and sucked all the joy out of the activity. I felt guilty. I feel guilty.

I still struggle with this.

THE NEXT SIX MONTHS

The next six months are meant for more floundering about. More healing, more recovery.

Install that better sleep permanent. Come to terms with doing more in a day yet still balancing rest and pacing. Clearing away more of the emotional clutter (there’s still a portion of relationship-stuff to be addressed and revived). Getting the house and the cabin in good shape.

Getting through the dark winter months. Managing hormone levels. Hoping to get some sort of health level established, as a base for approaching middle age.

Dealing with the tremendous fear and worry I’m wrecking my body. Yes, I’m still scared.

So see you back on the first of May 2015, when I’m one year in recovery.

a dream I refuse to participate in

In my dream last night people were suspiciously holding me up on my way out of the supermarket. It was as if my head wasn’t done yet thinking up the street and the storyline and it was stalling me.

I refused to enable this dream.

So I turned towards the produce aisle
and crawled among the apples.

pic by sheridanck
There. Make a storyline out of that, dream master!

in other sleep related news:
1. the doctor’s office forgot to send a fax to the sleep clinic two months ago and my request wasn’t processed. I discovered this last week and fixed it but have been waiting for naught for months now.
All the while having bad sleep.
Tomorrow I’ll ring the clinic, check that they did get the paperwork. Then it’s a three month waiting period and then I can go and have a sleep study.

2. while I do lie awake now again every night I am waking up better rested. After my hour and a half insomnia I take a morsel of Hydrocortisone and this makes my body relax and allows for two hours good sleep. Instead of the broken snooze I used to have.

I have two possible explanations for this: one is that the cortisol dampens an allergic reaction or CNS alarm that otherwise keeps me from sleeping. This could be something lung related or throat related or gut related as these three areas give me pain/trouble at night.
Or this cortisol covers some of the usual awake response in cortisol levels, making me not dip too low.
Either way: I wake up feeling not too bad and I do not have to wait 45 minutes to come from a very very bad place.

I have better stamina during the day, presumably because of this. I also cover my cortisol and progesterone needs during the day better. (I now take 100 mcg of Progesterone every night. It doesn’t help me sleep -no allopregnanolone for me- but it does seem to cover my base line need for the hormone better)

Because of better stamina I try to be more physical active during the day. Having just spend 2 weeks in the city I’ve been walking and walking and showering and cooking. Doing multiple things on single days.
Physical activity is the best way to get hormone levels in flux and in balance so I’m really pleased.

I’ve had the opportunity and stamina to meet various knitter friends during these weeks and we had lovely cups of tea and chats and wool and spindle fondling. This makes me wildly happy.
Wild happiness is the best companion for a chronic illness.

PS
taking 50 mcg of vit D3 also helps. It really does. Never ever ever do I want to go too low on vit D again.

Sleep: progesterone pill works

Here are my sleeping hours of the previous month:
slaapuren jan 2014

Quite a lot of nights I slept through! (compared to my usual sleeping pattern)
In yellow when I took a progesterone pill to bridge the gap from nonREMsleep to REMsleep. I upped the dose as my period drew closer. This did not always work.

And here it’s sorted without taking into account the time the clocks said I went to sleep. Each purple block is 15 minutes of sleep:
slaapuren gecorrigeerd
compared to my record of the previous month, without prog pills:

In yellow is when I took a 100mg Progesterone pill. This is Utrogestan, the bio-identical hormone.

On some nights I didn’t sleep through. There were some causes: I did an earthing experiment around 17th of December. This messed me up, had my brain overexcited for three days afterwards.
The Atlas Profilax treatment may have had something to do with the nightmare I had.
The massage might have released all kinds of toxins.
On Jan 8/9 I took a lot of folinic acid (leucovorin) which releases too much excitement on my brain, I feel. I also forgot to take Valerian.
Then, as my period drew neared even two pills did not have the desired effect.
On Jan 21st I laid awake all night with terrible pains, from the baby carrots I had eaten the day before.

So it is important for me that my intestines are comfortable (foodwise + HCL help); that I take my Valerian each evening; that there are no sounds waking me up (especially deep rumbling sounds) and that I take a progesterone pill right before going to sleep.

Sleep: slept through! Theory to the test.

Last night I took a Progesterone pill and I slept through the night on an unusual day of my cycle (day 13). I woke up refreshed and extremely happy. This supports the theory I’ve cobbled together in the last few days.

The happiness came from high serotonin and noradrenaline, I felt. And of having a good night sleep and perhaps having found another sensible theory!

On a side note:
I have noticed I’m quite excited the last few days.The amount of blog posts is indicative. This is “excited brain” on display. Not a good thing per sé.
And I feel a little sheepish that you all can see it.

I think it comes from the mB12 and Folinic Acid supplementation causing all kinds of waste to come free (akin to Copper Dumps) and raising noradrenaline. (the last week I’ve laid awake for 3 hours or more instead of the usual 1,5-2 hours). Aided by the Atlas Profilax treatment that activates overall my Sympathetic Nervous System is having a good time at the moment.
Luckily I succeed at shutting it up twice a day, when I take my horizontal rests.

The only other thing I know to do is be physically active during the day (I háve to walk outside every day since the AtlasPROfilax) and lessen the mB12 and Folinic Acid. Take a small break from Methylation.

So I’m going to the motions and I know it. I hope to calm down to my regular self in the future.

COPIED POST
The post under this paragraph I wrote this morning for a Spanish guy on the RisingPhoenix.me forums that shares the same sleeping pattern as me. (should that be “as I”?)
It’s full of white space because brain fogged people need their words in small doses.

Hi,
I’ve got a theory for my sleeping 5 hours and then lying wide awake for 2, being very alert. It fits all the symptoms and medical data I have.

SHORT VERSION:
after 5 hours I get excess noradrenaline on the brain. This prevents GABA rising and REMsleep commencing and makes one very alert.

Oral supplementing of the neurotransmitter Progesterone makes me sleep for 7 or 8 hours straight. Maybe because one of its metabolites, Allopregnanolone, dampens neurons firing and promotes GABA. It is as potent as benzo’s and sleepingpills, which is what most people use for this kind of insomnia.

Progesterone is NOT a female sex hormone.

LONGER VERSION:
In the brain a small amount of noradrenaline is needed after the 4,5 hours of nonREMsleep to stop the REM-off neurons from firing and let REM-on neurons start. When REM-on neurons get active GABA will rise and REMsleep will start.

REM sleep depends on high GABA.

Too much noradrenaline makes this impossible. GABA will not rise and insomnia will cause more noradrenaline. Noradrenaline is the neurotransmitter that makes you very very alert.

Reason might be MAO A not breaking down noradrenaline sufficiently due to a mutation.

Another reason might be too low Progesterone (I have this, tested and proven). Progesterone is not a female sex hormone, it is a human hormone. Testosterone is made from it. Cortisol is made from it. And it is a neurotransmitter in the brain.

In the brain Progesterone increases MAO’s activity slightly.

Progesterone’s most profound neuronal effect, however, results from its direct effect on the neuronal membrane. Progesterone has an inhibitory effect on neuronal excitation, depressing neuronal firing.

One of its metabolites in the brain is Allopregnanolone. This is a neuroactive steroid that does something with GABA. It has a potency similar to that of the most potent benzodiazepines (Valium etc) and approximately a thousand times higher than pentobarbitals (sleeping pills).

(I still need to check my sources but this one put me onto Allopregnanolone and this one researches REMsleep)

CONTEXT:
Noradrenaline is noradrenergic, meaning to do with the Sympathetic Nervous System.
Onset of REMsleep and GABA is from cholinergic brain input, it is about the Parasympathetic Nervous System. (source here)
The nervous system is not limited to the brain, of course.

REMEDIES:
– stop noradrenaline from rising (how? how? How do I get the Sympathetic Nervous System to shut up?)
– stop REM-off neurons from continious firing (how? by taking benzo’s? by taking Allopregnanolone?)
– raise GABA (how? taking precursors?)

SUPPLEMENTING:
Taking GABA is useless, it cannot go through the blood brain barrier (BBB) because it is too big a molecule, say people on the forums here. If a GABA supplement does have a soothing effect it means your BBB is leaky (search forums on this, Hip and Gestalt say smart things about this)

Progesterone: only take progesterone, no progestins. Be vigilant about this. Read the label.

Take the oral pill, not the cream, someone one the forums here said the pill form is the only form that yields Allopregnonalone. As is my own experience too.

In Europe the (only) correct brand for Progesteron is Utrogestan. It is not over the counter. Your doctor will probably resist and needs to be educated. Both on Progesterone/Progestins and on males needing this basic hormone.

A 100 mg pill gets converted to 10mg active Progestrone (the liver filters out the rest, working hard). This 10mg is the dose a regular human body needs for a regular day, it’s a physiological doses. It is what a normal body produces on its own. Supplementing the full 10mg is too much for a man who -presumably- produces at least some of his own in his adrenals. Problem.

Females need more because they also use Progestrone to balance out Estrogens. Their physiological dose varies every day and can range from 10 to 60mg. (60mg on day 21 of cycle)

Larger Utrogestan pills (200/500mg) are for females in pregnancy. They may need much more than the daily 60mg to keep their baby on board which is where the hormone gets its name: PRO-GESTational-hoRmONE and our association with it being a female sex hormone.

HRT = RISKY
There is no knowing in advance how your body choses to convert the Progesterone. It may raise your Testosterone, your Cortisol, your Aldosterone. Taking too much may numb the receptors or lower your own production.
HRT is risky business. Always start low and go slow.

10 mg Progesterone is excess of what a man needs, I feel. I’d want 20 or 50mg pills to start with but these are not produced. You could cut open a capsule and take only the white liquid, I guess. It looks like paint.

One thing about taking physiological doses is that your body is able to get rid of it within the day. You are not overdosing as is often the case with conventional HRT or other drugs.

ME/CFS people probably have decreased capacity for elimination so should even take less, of any drug or supplement. On a positive note: we notice effects sooner so small doses give us information fast.

MY EXPERIENCE
On some nights I take 100mg Utrogestan pills for my menstrual cycle and then I sleep through the night every time, unless it’s the last week before my period. I was told sleepiness was a symptom of too high a dose. Now I am not so sure. It feels awful during the day and I avoid it. But at night I sleep well and wake up with new vigour. And now I found a plausible explanation for it.

As long as my liver can stand it and I wake up feeling refreshed I am now taking Progesterone at night. The correct thing to do is find out with how low a dose I sleep through. But because my need as a female differs each day and I have CFS I’m not up for cutting up pills and taking notes yet.

For you I have no quick solution, sorry. Only this theory that, to me, makes sense and fits both our symptoms.

UPDATE
I just learned the antibodies to GLUTEN also block conversion from glutamate into GABA.
Leaving ones brain with too much glutamate (*boing! boing!*) and not enough GABA (zzzzz…)

source = http://neuroendoimmune.wordpress.com/2014/06/03/is-gluten-making-you-overstimulated/

Neurotransmitters: progesteron on the brain

Just for funsies I was wondering about the relation between noradrenaline (NA) and progesteron in the brain. Any neurotransmitter interference there?

Boy! Did I hit the jackpot!
It’s only from one source and I haven’t had time to check out the source itself or other sources or research but if this is true it connects a whole lot of dots.

the source: sexualhealthmedicine.com

PROGESTERON AND SEROTONINE
Progesteron and oestrogens claim serotonine receptors in the brain. Oestrogens promote the growth of these receptors, progesteron decreases it. This can account for some of the depressive feelings during PMS (post menstrual syndrome, occurring at least one week before the period, when oestrogens drop and leaves behind a field of serotonine receptors who’ve got nothing to feed upon).

PROGESTERONE AND MAO
Progesterone increases MAO activity, Estrogens decrease its functionality (!!)
Meaning Progesterone promotes excitatory neurotransmitters getting catabolized, broken down, whisked away.

People with progesterone deficiency have their brain bombarded longer by excitatory neurotransmitters? (it fits the symptoms of Estrogen excess)
How about people with progesterone deficiency AND a faulty MAO A enzyme? oooh boy….

Estrogens numbs the MAO enzyme, allowing the excitatory neurotransmitters to keep bouncing around in your head. People with natural high levels of these neurotransmitters are active, excited and happy (depending on their individual signature of the mix).
People who are low on these neurotransmitters (ADD people perhaps) get depressed when their Estrogen levels drop and Progesterone keeps egging on the break down of the few neurotransmitters they have. They would have very depressive PMS.

But it might be more complex than this. Balancing hormones teaches us that hormones are not like scales: add a little here and it will decrease over there. No, it is more complex.
Having higher levels of a transmitter makes its receptors more numb for it and makes the receptor for its antagonist more hungry. For example, taking more Progesterone enhances the level of Estrogen receptors. Making for more tender breasts during PMS, even though you are supplementing with higher levels of Progesterone than you ever had naturally.

SHORT QUESTION ABOUT HAPPINESS, ENDORPHINES
Might a happy feeling come from Endorphines and not from the mix of high dopamine and progesterone supplementation?
Progesterone correlates to feeling at ease, calm (hello PNS). Not happiness per sé.

PROGESTERONE IN THE BRAIN: SLEEP
Another article from the same source kept me awake last night:

  • Estrogenen increase the serotonergic, noradrenergic and opioidergic activity in the brain. (grrrrr!)
  • Progesterone increases MAO slightly. Progesterone’s most profound neuronal effect, however, results from its direct effect on the neuronal membrane. Progesterone has an inhibitory effect on neuronal excitation, depressing neuronal firing.
  • one of Progesterone’s metabolites is called Allopregnanolone. This is een neuroactive steroid. Allopregnanolone hyperpolarizes neurons by potentiating GABA-mediated synaptic inhibition. It acts at a neurosteroid-specific site on the GABAA receptor to facilitate chloride channel opening and prolong the inhibitory action of GABA on neurons. Allopregnanolone is one of the strongest ligands of GABAA receptors in the CNS, with a potency similar to that of the most potent benzodiazepines (Valium etc) and approximately a thousand times higher than pentobarbitals. (sleeping pills)
  • brain activity of progesterone and allopregnanolone is not dependent solely on ovarian and adrenal production. It is made in the brain itself.

TRANSLATION:

  1. Progesterone depresses neuronal firing.
  2. Its metabolite Allopregnanolone eggs on GABA activity (GABA is needed for REMsleep!)
  3. Allopregnanolone does the same as benzo’s do, the drug so many insomniacs turn to
  4. Allopregnanolone does what sleeping pills do a thousand times better
  5. Progesterone is made in the brain (what if my deficiency is expressed there too? Is it synthesized in the brain from cholesterol? How does this work?)

I
AM
GOING
TO
SCREAM
NOW

Just for a little bit.
It’s all those excited neurotransmitters you see. And not enough progesterone to depress neuronal firing.

I want more (to know about) Allopregnanolone.

 

PS a strong symptom of Progesterone overdose is sleepiness. Allopregnanolone would account for this, as it’s as potent as the strongest sleeping aids.

taking a Progesterone pill (100mg) is the one thing that gets me through the nigh and only during PMS time. Earlier in the cycle and I feel very very groggy the next morning.

PS2 on RisingPhoenix someone says that it’s oral Progesterone that gets converted to this Alloprgnanolone. Not so much the transdermal cream.