I want to apologize in advance for the long read, but it is very hard for me to accurately describe my current situation. I am desperate since my life has not really been worth living for the last 7 years. I can even accept that I will feel ill the rest of my life. I just want to feel a bit better so that I am able to do the only thing I want to do, create 3D and 2D art. At the moment I can’t. I am just forced to watch my life go by day in and day out, trying to work, exercising, fasting, taking supplement and medication but nothings helps. I am not depressed, I do not have anxiety, this is not psychological. Now I have turned 35 and I know this is my last chance. I truly believe that if I hadn’t gotten ill I could have reached the highest level, even now I think I am at a good level, but I haven’t been able to do much professional work due to this illness. My original education was a degree in IT/Programming which I passed with honors. I think I was and still am quite intelligent. I have always been a very hard working person with a high degree of personal discipline.
I hoped that I would get some improvements in time but I have become worse not better. Sometimes my symptoms improve a small percentage for a few weeks or a month. Then at least I have a chance to force myself to work, however difficult. But afterwards I always collapse back feeling too ill to do anything at all for months. I have been to a lot of doctors and neurologists, had a MRI. I have taken 100+ different supplements, have done all the basic treatments like HITT exercise, intermittent fasting, healthy vegan diet, meditation and have always kept trying to work through it. But there is no lasting improvement. All my energy goes into battling this illness, and very little remains for actually working.
Symptoms
There are no words I can use to describe what I feel and how absolutely horrible it is to someone who has never experienced this. Before I got these symptoms I have personally never felt anything similar or something that would truly illustrate my symptoms. I can only use vague analogies to diffuse brain symptoms like having high fever or being drugged or drunk. (The frequently used term ‘Brain fog’ is far too mild for my symptoms) I constantly (24 hours 7 days a week) feel like I am severely drugged, heavily sedated, not awake. There is hardly any fluctuation in the severity of the symptoms, they vary somewhat from ‘bad’ to almost totally unbearable, but that's it. It feels like I am walking around with a brain that has a very high fever (but without feeling feverish) just the totally ill, zoned out, groggy and drugged feeling, like I haven't slept for days but far worse. Especially the last 7 years have been a living nightmare (literally). There are long periods where I feel so bad that every minute is agony.
I also have extremely darkened/dimmed vision which has become slowly worse over the last seven years. It is very hard to describe how I see everything. My vision is not blurry, I can also still see all the colors but when I look around everything looks sort of dark, yellowish and has strange dark contrast, it's surrealistically bad. It's somewhat comparable to walking from the bright sunlight outside into a dark room, or when you have just looked into a bright light and your eyes still have to adjust, but different and much worse. My vision is also slowed down like my brain can't interpret the images fast enough, like everything is lagging a few frames behind. It is a horrible sensation coupled with my other brain symptoms. Especially in the evening I see everything very dark, sickly, and with a yellowish cast as if it is lit by candlelight or a single fluorescent bulb that still needs to warm up. There is nothing wrong with my eyes, the image processing in my brain is not working correctly. Maybe comparable to someone on drugs or with a high fever). When I feel worse, my dark/dimmed vision also becomes worse. I can’t walk outside, shop, sit in the sun, read, watch a movie or do anything else without feeling ill, drugged and seeing everything strange, dark/dimmed.
I guess another way to describe it is that you could also still force yourself to do everything when you would always have a 40 degree fever and having not slept for days while being drunk. But it would be horrible to do anything. I can still more or less do everything I could before, but it takes so much effort and I feel so bad that it is almost not worth it. I alhaven’t driven a car in 7 years, it would be too dangerous (not that I care about driving). To illustrate it somewhat; I would trade these symptoms for almost any other disease like for example amputated legs or AIDS or worse. If only my brain could feel somewhat better again.
Over the last few years I also have also been battling worsening Anhedonia. I lost the ability to feel much pleasure listening to music, playing games, watching movies or anything else. This is not the cause, but the result of the worsening brain symptoms. The Anhedonia only appeared much later than the other symptoms. The heavy brain and vision symptoms are bad enough but combined with anhedonia it makes it nearly impossible to do anything sustainable. I can’t be creative when I feel nothing, when I don’t even care whether I would make the best art ever. I can’t get inspired anymore. I would always get really inspired by other people’s art, but most of the time I just don’t feel anything now. I still know that this is the only thing I want to do, that I would give everything to do this, I can just not feel it anymore.
Sometimes I have 20-30% emotions for a few weeks/month (mostly at the same time when my other symptoms are slightly better), then I go back to 0%-10% emotions. However bad the constant brain and vision problems, I think I hate the anhedonia even more. The inability to feel much emotion and motivation has taken away my will to fight through these horrible symptoms, and makes me feel defenseless.
Lifestyle
I have always eaten healthy and varied, never smoked and never drank alcohol or used drugs my entire life. I am 1.92m tall and have always had a lean muscular body type with little fat. Since the last 3 years I have tried a very strict calorie restricted Vegan diet, to see if this could help mental clarity. Most of the time I also eat in a 20h fasting 4h eating pattern of intermittent fasting. I believe a strict regime of exercise (HITT), intermittent fasting, meditation and using my brain intensively helps somewhat (maybe 15-20% improvement for a month or two). I exercise about one hour a day broken up in small 5-10 minute sessions. But it puts a lot of strain on me, and after a few months I sort of collapse in unbearable brain fog and apathy which then lasts months. I can never seem to keep any of the improvements once I break down. Besides I still feel 70-75% drugged and horrible even at the best of moments. (I also tried cold showers for months, but they did not seem to do much).
When I don’t fill too ill, I try to work as hard as I can for up to 8 or 9 hours (Which results effectively in about 20-30% of my normal working capacity). It’s like trying to read, learn and work totally drugged, groggy and feeling ill, It feels horrible. Because my symptoms put so much drag on my performance, that most of my energy is lost, I become very tired and eventually collapse again into doing nothing. It feels hopeless. I have no depression and no anxiety, I just feel too ill for that. This is not a dissociative disease like derealization or depersonalization, I have read enough about those to know.
I sleep for 8-10 hours a night. Since my symptoms worsened, I always dream rather vividly and wake up multiple times a night. I almost never used to remember my dreams. Now I have 4 or 5 strange disorderly “fever dreams” every night. I should probably get a sleep study done to determine if my Rem and Deep sleep have been dysregulated. But I have just become too tired of begging doctors for tests.
I have 0% libido, and I honestly don’t care about that either. It’s not Testosterone related either (it didn’t matter if my Testosterone was 4 (too low) or 18 (medium high) in the tests, like it is now). Testosterone does not seem to have any influence on my brain symptoms or anhedonia either. I think I even felt better with lower Testosterone than with higher values, though this can be a coincidence.
Physical symptoms
Three years ago (maybe longer) my physical situation has also deteriorated. I don’t even really care about that though. I have an AV-Heart block type 2 (During the day my heartbeat is about 35-50 beats a minute) At night it drops to 30 or even lower sometimes.) It’s also very irregular, skipping one or two beats in every three. This is quite rare for someone of just 35 years old in good physical condition. I also developed Aplastic anemia: low count of (red, white , blood cells and platelets). My testosterone levels were low but they have somehow restored to normal again. Testosterone is actually on the higher side now. All my other hormones had also dropped (Growth hormone, Thyroid hormone, etc). I have been taking Thyroid Armour (T3, T4) for that. Sometimes I feel weak and tired, tired arms, tired legs.
Medical history
When I was a baby of about 1 year, I fell on my head from the kitchen top (quite a large height). I was unconscious for hours. I could very well have sustained some brain damage from that, though it did not seem to have affected my intelligence or my mental clarity. However, I had emotional problems. Anxiety, depression and attention/concentration problems later in life seem to be higher in people with childhood brain injuries.
During my entire childhood and adolescence, I have had heavy migraines (sometimes multiple times a week), which could not be treated with medication. I also had Cyclic Vomiting Syndrome 2 to 3 times a year. This is a horrible disease with unrelenting unbearable and incapacitating nausea and vomiting every few minutes for almost a week at a time. In an acute episode I was throwing up every few minutes day and night, with almost no sleep, and no relieve. I had to be hospitalized a lot because of dehydration, when I was younger. Doctors were not familiar with this disease, and I did not receive any real treatment. I had to self-diagnose it much later when I was 23 years old and have since taken a 5-HT3 receptor antagonist (Zofran) in the acute phase. Fortunately, only high fever triggers it now. It seems to be related to high levels of melatonin, that is why it is mainly a childhood disease.
I have always had attention problems and problems with overcoming heavy resistance to start working. On the other hand, I have always been a very driven person with a lot of discipline. I had to make myself very angry and I always had to use my own adrenaline to be able to focus and motivate myself. I could not work without it. Unfortunately I didn’t know it was very bad for the brain to be stressed all the time. I feel that I was fighting against myself a lot, which made life difficult.
When I was about 23 years old I was bitten twice by a tick. I didn’t develop a rash. Multiple Lyme tests were inconclusive (with a few positive bands, most not specific) and positive Lyme-PCR. But unfortunately both false-positive and false-negative Lyme PCR test results are common. I have treated a possible Lyme disease when I was about 28 with high dose antibiotics Doxycycline, Amoxicillin and Klacid for about 5 months. I seemed to have some improvement with Amoxicillin, but it was not sustainable once I stopped. This improvement could also have been a coincidence. The other antibiotics did nothing. I still cannot exclude the possibility of Lyme 100%, but it does not seem very likely anymore.
When I was 23 years old I also took Propecia (Finasteride), for hairloss. I was very scared to lose my hair because it was falling out quite rapidly, and early baldness runs in my mother’s family. I had a bad reaction to the drug and quit after a few months (tapered off). The main symptom was a heavy sedated feeling in my forehead, comparable to for example dentist sedation which lasted weeks. After this feeling subsided I had decreased mental clarity and vision problems (only a fraction of what I have now though). A small minority of people seem to develop persistent problems after quitting (see propeciahelp.com). Brain fog, lack of mental clarity, vision problems, and emotional blunting are a few of them. One of the possible theories behind the worsening symptoms after quitting is that suppression of 5AR leads to lower Allopregnanolone, which is a neuroprotective hormone. Less protection against physical and psychological stresses can than result in damage to the brain. But there are multiple other theories involving permanent gene expression changes.
I think my brain might have been more vulnerable to cumulative damage due to changes in neuroprotective hormones and previous sustained physical trauma. One of the strangest periods of worsening was when I did a certain type of exercise. I think this was around 27-28 years old. I used to do very hard air-punches, and this would jolt my neck and head. I didn’t think much of it at the time. And I did not see the connection between sudden periods of worsening symptoms (weeks long heavy sedated feeling in my forehead like a dental sedation) and these exercises. Only later did I read that TBI/concussions can also be the result of non-impact injuries and that the effects worsen in the weeks following the incident. Because of this lag in the symptoms appearing I did not think at the time that these exercises were a probable cause. Only when the symptoms became very bad did I stop. Since then I have only had the episodes of the sedated feeling in my forehead and the worsening of the symptoms after having probable hypoxia during my sleep.
There were only two times years later when the same acute worsening and physical dental-like-sedation feeling in my forehead occurred again. I have always had a deviated septum, and my nose easily blocks when I lay down. One night I dreamed I was suffocating, that I could not get air and I could not wake up either. Only later did I manage to wake, but in the days following the same heavy physically sedated feeling in my forehead returned. During the months after this feeling very slowly disappeared, but the underlying brain and vision symptoms had worsened substantially. A year later this happened again. Since then I have chosen to sleep upright, always take low dose nose drop (alternating left and right). I also always sleep with oxygen saturation meters. The heavy sedated physical sedated feeling in my forehead has never returned, and also not the sudden worsening of my symptoms. Since then I am stuck feeling between 70% and 95% ill/sedated/drugged (where 100% would be an unlivable almost a comatose state).
NMDA, Dopamine, Noredephirine, GABA
There is probably brain damage on multiple levels and maybe also dysregulation in NMDA, Dopamine, GABA, hormones or gene expression within my brain. My experience with Pregnenolone leads me to believe that at least part of my symptoms are related to NMDA and GABA. It is Likely that my NMDA system (receptors, transporter, enzymes?) have somehow got way out of balance, and that this has resulted in too little neural activity. This could be further complicated by downregulated Norendephirine, Dopamine and upregulated GABA systems and physical brain damage. It’s almost like an inverse anxiety state. Overactive NMDA and underactive GABA leads to anxiety, so the inverse of underactive NMDA and overactive GABA probably leads to feeling, drunk, sedated, drugged and having anhedonia (and being totally devoid of anxiety). Unfortunately, Pregnenolone (though I only used it for a short time) could have made this worse by downregulating NMDA receptors and upregulating GABA receptors, since it is an agonist for NMDA and antagonist for GABA. Memantine could possibly help to reverse some of the NMDA and Dopamine receptor downregulation. But this would probably make me feel even worse.
Current supplements, medication and food
Medication: NSI 189 - 25 days (Phosphate and Freebase) 25-30mg sublingually unfortunately it has done nothing yet but it could take more time). It is just too early to tell. Maybe I should take a higher dose.
Nootropics: (no effect, but I hope they increase BDNF): Noopept, Semax, AM-Semax-Amitide, Selank, Oxiracetam. I still have to try these I have laying on a shelf: Pramiracetam, Amiracetam, Coluracetam. I have tried Piracetam many years ago and it did not help my symptoms.
Supplements: C, B12, D3, B1, Omega3, Resveratrol, Curcuma, Ginkgo, Ginseng, Cordyceps, Q10, TMG, Sam-e, Lions mane, Bacopa, Yohimbine HCI, Phosphatidylserine (low dose to prevent cortisol suppression), P5P, B6, Calcium, Creatine, Rhodiola (cycle 10 days), Acetyl-L-Carnitine, EGCG, Thyroid medication: Armour with T3 and T4, I am trying out low dose DAA sometimes, but am scared for neural toxicity and NMDA downregulation.
Food: Mixed Salads with very little dressing. All sorts of cooked, steamed and baked Vegetables like Onions, Parsley, Leaks, Asparagus, Mushrooms, Paprika, Tomatoes, Beetroot. Fruits Apples, Blueberries, Strawberries, Raspberries, Cranberries. Some nuts and seeds, some raw Cacao. Some sardines. Very little fats, No saturated fats, No milk products, No sugar, Very sparse or no wheat products. I also tried a diet with a lot of red meat/protein a few years ago, and also tried 100% gluten free diet but neither did anything to improve my symptoms.
Previous Supplements / medication (I do not take these at the moment):
Supplements:
Choline: Alpha-GPC, CDP Choline, Uridine, UDP, NAC, (Seemed to work a little bit at first but I believe these made my anhedonia worse and eventually increased my brain symptoms by lowering dopamine. I know choline and uridine supplements can increase Dopamine receptor density.
Other supplements I tried: Piracetam, NAND (sublingually) L-Tyrosine, L-Tryptophan, 5HTP, Mucuna Pruriens, L-Dopa, L-Phenylalanine, Low dose aspirin, DMAE, Vinpocetine, Progesterone creme, DHEA, Copper, Zinc, Iron (low dose), K1, K2, B2, Folic Acid, 5-MTHF, Niacinamide, Inositol, Proline, Biotin, CBD oil, Coconut oil, Licorice, Beta-Glucans and many more I don’t remember.
Pregnenolone: Used this 4-5 years ago for some time, worked very well in the beginning (the best result I have had with anything). About 35-40% improvement. It gave me massive hairloss and acne (I never had acne before). It also gave me headaches. I have used it on and off for a few months spread out of a few years. It gradually worked less well, until it did nothing anymore. I still got the negative side effects like the hairloss and the acne when I tried to take it, but it gave 0% improvement for my symptoms. Pregnenolone seems to act as a NMDA agonist and GABA antagonist. I wanted to correct for the possible hormonal dysregulation caused by Propecia and Pregnenolone seemed neuroprotective. I still do not have the idea Pregnenolone made my symptoms worse. But reading about these NMDA and GABA interactions now makes me wonder, especially since it does not work anymore.
Ritalin: About 4.5 years ago I tried Ritalin for only a few months out of desperation. It did nothing to lift my brain symptoms and vision/perception problems, but it did give me more motivation to work through them. Ritalin made focused and It took away the resistance for working through my symptoms. It felt very mild, not euphoric or anything. Unfortunately, I build up tolerance fast, and even a year later, when I tried it again, it did nothing (no matter the dose). It had dampned my emotions
Coffee does nothing. It does not matter if I drink 8 coffee a day, or none, it has no noticeable effect. Nicotine: tried a few nicotine gums, had no positive effect at all.
Medicines/Nootropics that I could maybe try at some point:
Deprenyl, Rasagiline, Hydergine, Cerebrolysin, Naltraxone , XY-REM, P21, NGF, Memantine, Modafinil, Welbutrin, Strattera, Amoxicillin, DIHEXA, 7,8DHF
I hope someone can help me.
I only want to treat myself, since I have lost hope in doctors and the medical system here. Maybe some doctors in the US are more resourceful, and able to think out of the box.
Edited by Sephrioth, 11 November 2015 - 05:38 PM.
