Putting one’s entire health history online is not always a wise idea but I’m doing this for sole purpose of being helpful to people who might be sharing similar health challenges and are not able to find solutions.
Over the years I’ve discovered that my symptoms are so erratic that no doctor or “specialist” was able to put it all together. In fact, most of their advice made my condition worse. Having spent my savings in doctor fees, tests and supplements I’m slowly finding solutions myself and feeling better every month. My closest self-diagnosis is advanced ‘adrenal fatigue’ with a plethora of complications that come with it – insomnia, gut issues, liver stagnation, fatigue, etc.
I still do not have all the answers and going through many up and downs but things are more stable now (see my rolling updates below). Mainly because I changed my approach to a very gradual and careful healing process. Overall, last five years had been the most debilitating, frustrating, hopeless years of my life but I learned a lot. If I can help any of you to get better then this entire journey through hell was well worth it.
Contents: Jump to...
- 1 Background
- 2 Onset of Insomnia
- 3 The Self Diagnosis and Testing Mess Starts
- 4 Manifestations of Insomnia
- 5 Heat in Abdomen Area Following Meals
- 6 Terrible Stress Response & Heart Palpitations
- 7 Food Sensitivities
- 8 Pulsating Spasms from Abdomen Down to Genitals and Legs
- 9 Sensitivity to Cold
- 10 Constant lower back pain
- 11 Prone to catch any passing cold (super tough recovery afterwards
- 12 Unable to Tolerate Strenuous Work or Exercise
- 13 Tinnitus
- 14 Fatigue
- 15 Extreme fatigue bouts (aka adrenal crashes)
- 16 Frequent urination
- 17 Strange Sinus Popping Sounds
- 18 TCM Organ Clock Observations
- 19 Tongue Color
- 20 Clinical Tests
- 21 All the diseases that I thought I had but didn’t, well who knows…
- 22 Supplements and vitamins tried over the years
- 23 What I’ve changed over the years that made a difference
- 24 Rolling Updates: What I’m going through now:
No major surgeries or health concerns till about age 34 (except for stress related TMJ and teeth grinding which developed when I was about 24 while holding a stressful job (let the grind begin!). Age 34 had an H Pylori infection and gastritis. Took care of H pylori with natural supplements but gastritis pain lingered. It was diagnosed as as irritation of gastrointestinal tract due to bile back-flow (should have had my first clue here).
At age 35 had an acute appendix inflammation which had to be removed via surgery (another clue). Same year started developing chronic lower back pain which could not be easily relieved by exercise (yet another clue). I kept experiencing longer and longer periods of wired but tired feeling, needing less sleep (thought this was cool at the time) but was not yet alarmed as these symptoms would come and go. At the time I merely related to higher stress levels. Moved back to Lithuania (from 13 years in California) in 2012 and the party really started.
Onset of Insomnia
Things began slowly with light and interrupted sleep. I would be very restless at night and started waking up tired.
As serious onset of severe insomnia happened six months later – June 2013. After a few days out in the country, lots of work, lots of wine and little sleep. Already during day time I felt like my engine was overheated but I was wired – didn’t even think about rest – it was all go go go… That is until the night came – this is where the shit hit the fan. I could not fall asleep and was experiencing heat flashes, sweating, heart palpitation, some sort of spasms (intestinal area) that run from abdomen down the legs. It felt as if my system could not go into rest mode, there was a ball of tension and heat in my stomach, I was very wired and extremely tired. As days wore on this persisted and I also noticed I could not sleep on the left side as I would wake up with my heart racing and usually from some wild, disturbing dreams.
The Self Diagnosis and Testing Mess Starts
My first source of help were a few people that knew something about Ayurveda. Diagnosis – “Vata disorder.” So I took anything warming (ginger, cinnamon) to calm the “wind” but it made things so much worse – I was burning from inside and could not sleep at all. I was starving at night (as the warming herbs kick up the metabolism and I wasn’t sleeping anyways) so I ate toasted cheese sandwiches, drank milk (another Ayurveda advice) but this caused even more gastro discomfort and it dawns on me later – I am starting to not tolerate certain foods.
Manifestations of Insomnia
Months later things settled into a condition that would manifest in several ways:
1. I either have chills in the body and can not fall asleep or I wake up from chills in my body around 1 or 3-4AM. Those chills also manifest as some slight spasms or pulses of cold running down from abdomen to my legs and my extremities would be very cold too. During some periods I want to urinate even if the bladder is empty, having cold and irritating spasms running down my leg. I learned I could do some deep breathing and bring the heat back and fall back asleep.
During this “disturbed” sleep phase I noticed that meals eaten later than 6PM wake me up a couple of hours after I fall asleep and I feel stress, restlessness and irritation. Normally what helps is a warm cup of water and the body relaxes.
2. Second type of insomnia is more severe and manifests differently – in intense episodes. Basically what wakes me up about 3 hours after I fall asleep is warmth/heat in my body. I feel alert and can not go back to “rest” mode. These can last for months (as it is now, which I feel was triggered when I caught a cold virus and bacterial bronchitis.) These episodes are the most debilitating and disturbing as I feel like a walking zombie during the day.
Heat in Abdomen Area Following Meals
This has been one of the very first and most persistent annoyances I’ve been experiencing. About 30-45 minutes after eating I start feeling heat around my abdomen center. It is not burning or painful, just kind of hot – right below my rib cage and belly button. Years later I also noticed that it is worse when I’m reclining. I’ve searched everywhere for the answer but have not been able to solve this riddle. The working theory I have is that is bile back-flow caused by excessive liver yang (TCM).
I feel very similar heat during stressful moments as well.
Seems like this symptoms gets a bit better in the winter and worse during summer.
Another possible culprit is the so called Visceral Hypersensitivity – related to overactive central nervous system.
Terrible Stress Response & Heart Palpitations
Any slightest stress would send my heart pounding with blood pulsating in my temples. I was extremely irritable, snappy and sensitive to sounds, light and any bodily stress. My stress response was completely over exaggerated and it took me days to recover from stressful events.
Food sensitivity: can not drink milk, can not have any raw garlic or onion, or any ginger, no radish, nothing warming as it would keep my body hot and awake. Could not eat any raw salads or veggies as it would make me cold or simply keep me awake at night. Can not eat or drink anything cold – can not sleep and feel that heat in abdomen. Later I figured out that all histamine rich foods keep me awake at night too.
Raw foods …. later I learned this was due to spleen qi deficiency (TCM), aka weak digestion which stresses the heart and adrenals (kidney jing).
Pulsating Spasms from Abdomen Down to Genitals and Legs
This one was one of the first and nastiest symptoms. Sometimes after meals I would get these irritating pulses or contractions that would start in my abdomen and run down to genitals all the way to my feet. This was particularly bad at night – pulsating cold feeling, almost making me twitch or convulse from discomfort.
I later noticed this phenomenon was exacerbated by raw or hard to digest meals. I live in a country where potato dumplings (think gnocchi) or potato pancakes are a staple. These starchy foods were the worst culprit. So I started watching my food better and realized that these pulses would be much lighter after easily digestible meals. It took me more years to realize that I had developed a very sluggish and weak digestion (spleen deficiency in TCM) and these spasms were actually running along the spleen energy meridian.
Sensitivity to Cold
I was often awakened or prevented from falling asleep due to being too cold or too hot at. I was very sensitive to any cold surface, feelt as if cold is rising up my legs if I step on anything bear feet. One of the worst is feeling are chills from 10:00am-12:00am, preventing me from falling asleep. These chills are not alleviated by extra blankets, only by certain breathing techniques, hot water, sesame oil on the feet and herbal supplements. This most likely due to hypothyroidism or spleen qi deficiency (TCM).
I’ve learned that climate plays a major role as well. My symptoms and sleep gets worse during rainy days and cold winter days. When I travel to Mediterranean climate zone (such as California, Italy, Greece…) my symptoms magically improve in about three days: I have more energy, sleep better and improved appetite. I’ve heard I’m not alone and people resolve variety of health issues like asthma, high blood pressure, fatigue merely by moving to warmer climate zone.
Constant lower back pain
This symptom i is one of the earliest ones (started years before insomnia) and has been very persistent too. No yoga or back strengthening exercises were helping. It was this nagging, burning pain in lower back. It slowly alleviated after half a year of Qi Gong and herbal formulas. This was due to kidney jing defficiency (TCM), aka adrenal fatigue.
Prone to catch any passing cold (super tough recovery afterwards
It seemed I was catching every bug that was going around. It was taking me long to recover, especially if the cold causes fever and cough. Even after cold was gone I would experience debilitating fatigue (crash) and super bad insomnia for weeks afterwards.
Unable to Tolerate Strenuous Work or Exercise
Total in intolerance for any strenuous exercise – seems like any routine that is slightly more intense (running, light weights, cardio, even yoga) causes abnormal fatigue (crash) and disturbs my sleep at night even more.
This has been with me over the years as well. Initially, I though this was ear damage after a few nights out (lightly put) at the techno clubs of San Francisco but now I’m pretty sure that my tinnitus is related to kidney jing deficiency, aka adrenal fatigue. As I’m slowly recovering this symptom is getting better. By the way, a prolonged use of Zolpidem (Ambien, Stilnox) will also cause nasty tinnitus but it goes away about two weeks later after quitting the meds. Over the years I’ve noticed that my tinnitus and lower back pain corresponds with stressed kidney Yin – this happens either through inappropriate use of herbs (that are too yang or too yin consuming), catching a cold or periods of very bad insomnia.
This is one of the most annoying and most persistent symptoms. Comes in various shapes and sizes and progressed over the years turning into debilitating type a couple of years later after insomnia started). It manifests as heavy legs, very low energy to do anything. In other words – total exhaustion.
Extreme fatigue bouts (aka adrenal crashes)
My system seems to be extremely fragile and I’m very prone to adrenal crashes. They can be triggered by various supplements, colds (especially bad from respiratory related colds – bronchitis really wiped me out for months). Adrenal crashes is when the crap really hits the fan for me and I can hardly drag my feet or talk longer than a few minutes without hyperventilating like an old dog in Florida heat.
I drink a lot and pee a lot. Nights are just like days, need to get up and pee twice a night even if there is no much fluid to pee out.
Strange Sinus Popping Sounds
This started about three years into my condition. I usually notice these popping sensations in my sinuses, usually the right one. My sinuses are dry and usually cause no issues but I thought this is a peculiar symptom that may mean something to someone with experience.
TCM Organ Clock Observations
9-11am feel a bit cold and experience cold feet, especially toes;
12pm-14pm pretty bad post lunch fatigue;
14pm-17pm general feeling of tiredness or fatigue;
9pm-11:30pm might be experiencing chills if ate bitter food, drank bitter tea, had yin tonics, etc.;
1:30am-2:30am wake up like clockwork, usually pretty hot and restless;
4am is often second wakening. Few years ago this was from inner chills but now usually from feeling hot.
My tongue has always stayed this this way with variations of it being totally covered with grey coating or it being thicker.
Various blood work like liver function, pancreas and thyroid was showing up as normal. The only test that was a bit off was an elevated A-amalyse. A more recent blood work showed I had had Lyme’s and H-Pylori at some point in the past but the infection was no longer active. I knew I had H Pylori as I had to deal with it but Lyme’s? That was a surprise as I never had any symptoms. One of my biggest suspects remains a sub-clinical Lyme’s infection (had a tick bite, developed a spot – was given one shot of antibiotics) over the years that has depleted my system or it could have been fresh set of vaccinations before my trip to India in 2010.
Years later I also did an Organic Acids Test. What it revealed was very high oxalate metabolite count, some irregular Krebs Cycle metabolites, imbalance in neurotransmitters, low vitamin B6 as well as C, and some other markers. My practitioner interpreted this as leaky gut and changed my diet a bit, again.
All the diseases that I thought I had but didn’t, well who knows…
It is amazing that my symptoms are so broad and so over the board that it fit a plethora of most exotic diseases. Here is what I’ve researched and considered:
Methylation issues, toxic liver, hyperthyroidism, hypothyroidism, adrenal fatigue, SIBO, leaky gut, Lyme’s, H-pylori, dysautonomia, copper toxicity syndrome, blood acidity, histamine intolerance, candida, dysbiosis, vaccine damage, amalgam fillings, chronic fatigue…
Supplements and vitamins tried over the years
I’ve tried a large amount of supplements, diets and protocols. Like I said my body is very fragile – most of them have made me feel worse and some caused total crashes but I learned a lot. I will detail more of my experiences in the blog and videos.
This list is just to give you an idea but is not exhaustive by any means:
Vitamins: A, various B (especially Panthotenic Acid and Panthetine, P5P, B6, B12), various forms of C, D3, E, K. Minerals: magnesium, calcium, zinc, boron and complexes. Herbs: passion flower, 5-HTP, valerian, gingko biloba, skullcap, silymarin, artichoke extract, tumeric, alow vera, hawthorn, licorice, lecithin, motherwort, swedish bitters, Ayurveda… Amino acids: L-Tryptophan, L-Glutamine, L-Theanine, L-Methionine, L-Argenine, GABA, L-Taurine, L-Glycine…. Others: Melatonin, NAC, NAG, Inositol, Quercetin, Phosphatidylserine, Fish oil, Alpha Lipoic Acid, silica, probiotics, digestive enzymes (GB3 and others), metabolic formulas like SBF Formula, adrenal glandular and quite a few TCM formulas and herbs (follow link for detailed list).
In general, supplements that are too Yin (Vit C, A) and bitter herbs (dandelion, burdock root, Swedish bitters) make me too cold and experience inner chills, which prevent me from falling asleep for hours. Yet later I can wake up hot and not able to sleep from that. Sometimes it is quite the opposite: I would feel hot at bed time and not able to fall asleep and feel chills later at night.
During the biggest sleep crises I took AMBIEN/STILNOX and some benzos. Sometimes taking an anti histamine helps me to cool off and sleep better.
What I’ve changed over the years that made a difference
Through, study and experimentation I’ve come up with a few things that fit my body type and condition:
Insanely rigid routine
Rain, shine, party or parade I am in bed before 10pm. This has allowed me to maximize on quality sleep (happens before 1am), track my progress and monitor response to various supplements.
I am now on a very simple diet mostly consisting of of some veggies, chicken and fish. I completely avoid any stimulants like coffee or black tea, also potatoes, tomatoes, spicy things, all glutenous grains, beef, etc.
After discovering the elevated levels of Amylase I thought maybe by pancreas is having a hard time breaking down starches. After all, ever since I remember I get very lethargic after eating a starchy meal and in general, I’ve been avoiding high glycemic carbs, but not religiously. A couple of weeks ago I took out most grains, potatoes, sugary things (not that I abused them anyways) and felt better; had less fatigue and digestion felt better but didn’t quite resolve anything.
As of beginning of August 2016 I’m on Paleo diet and feel like gastro issues are better again, taking strong probiotic. My biggest battle remains food sensitivities, especially the ones rich in histamine which I eliminated to the best of my knowledge.
Ancient art of self-healing.
Traditional Chinese Medicine (TCM)
This ancient form of Chinese Medicine has been one of the most helpful systems of healing that I’ve come across. I’ve made most of my progress learning about it and experimenting with herbal formulas.
Rolling Updates: What I’m going through now:
Early Fall 2016
SLEEP: I survive mostly on antihistamines and by rotating Zolpidem on and off. Pretty much have to assemble my sleep from few intervals and get out of bed extremely tired.
ENERGY: Worst it has been. Seems like I’m living in one total crash. Hardly make it through the day, come home exhausted and can’t wait to lock myself in a room and just be at peace. Life totally sucks and feels hopeless.
GUT: Poor appetite, slow digestion, food sensitivities persist.
DIET: Quit all gluten a month ago (all dairy had been cut out for a while now). There’s somewhat of a relief but nothing major.
Started doing QiGong.
Early Spring 2017
SLEEP: Still waking up three hours after falling asleep hot. Sometimes I’m able to fall asleep after drinking water but often I’m not. Insomnia has not gotten much better even though there are periods when I’m able get through the night without too many wakings or wondering around.
ENERGY: All day fatigue, especially bad in afternoon. Difficult to talk for longer periods at work. Hoarse voice where I have to clear my throat. In general, it just feels like exhaustion. Even if I had four or five hours asleep, I feel tired during the day but not much sleepy.
GUT: I’m experiencing various gastro intestinal issues like lack of apetite, bloating, food sensitivities. Still feeling heat in abdomen following meals. Heat is especially bad from dairy or wheat products which I cut from my diet a year ago.
DIET:I try to stay modified Paleo but all include some non glutenous grains like buckwheat and rice. Eating fruits twice a day like mangoes and apples.
OTHER: I feel strange sensations in sinuses, sometimes popping as if there were some bubbles. Heat in stomach is about the same.
SUPPLEMENTS: Magnesium, B6, D3, K2, Fish oil, tried NAC, R-Alpha Lipoic Acid, Biotin (disaster), Milk Thistle, Ginko Biloba, SAM-e (disaster).
QiGong: making slow and steady progress and I would say that my overall health is very slowly improving but I have many setbacks where I lose hope again. This has changed me over the years where I’ve become neurotic about any food I touch and hyper vigilant to all body sensations. Even though this winter I felt real signs of depression and hopelessness I try to keep a positive attitude and know that I can get through this if I just can just understand what exactly I’m dealing with.
Mid Summer 2017
SLEEP: Finally improving to the point where most night I feel like I had enough and I feel more rested. This has all been thanks to exeperimenting with a few TCM herbal formulas which restore kidney jing and nourish the heart and blood, as well as promote harmony between liver and digestion.
GUT: My appetite has recovered quite a bit. I still feel bloated in afternoon if I don’t take the herbal formulas but I feel like my detox pathways are working much better now.
DIET: I’m able to eat more foods that I enjoy like goat cheese, kefir, oats, some nuts, even some rye bread but I have to be very careful and watch I don’t overindulge in sweets.
ENERGY: Also slowly improving. I still don’t have enough fire to last through the day without feeling fatigued but I feel like my battery is slowly recharging.
OTHER: Popping sensation in the sinuses seem to have gone away. Heat after food is somewhat less noticeable.
SUPPLEMENTS: Various TCM formulas, magnesium, B6, D3, Hawthorn, Fish oil. In general the strategy is to use mostly Chinese formulas from now on to nourish the spleen, build kidney jing, cool liver yang, nourish heart and blood (TCM).
QiGong: Doing at least one practice once a day but I feel I would be recoveing much faster if I gave it more time and did two practices – total of 2 hours.