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Lessons from ME/CFS: Finding Meaning in the Suffering
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18 years old, NYC, CFS all life, in need of suggestions

Discussion in 'Lifestyle Management' started by Dmitri, Oct 13, 2012.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Dmitri! I am sorry. I didn't mean to think you were a girl, see....that's how the illness effects me for sure..cognitive. I wouldn't say I have full on OCD. I don't do things repetitively. However, when I go to Vermont, or when I used to go to my cousin's in Vermont, I would become obsessive. Like, insanely. She had an old farmhouse and the basement was loaded. So much so that the house was deemed unlivable, but they were FINE in it. I didn't see the mold, I couldn't even really smell it, but I knew it was there because I smelled old wood and because I became so sick. I would itch my skin, I felt nuts. Plus, tons of dust everywhere. But, here's another example, back in 2001 I was living in an old Victorian home. I was in the attic. I had the worst allergies and I went out to San Fran for a doctor's appointment. When I got off of the plane, I felt so much better. I could breathe. Initially, I lived in San Jose which is dry and hot. I felt so much better. So much. I started treating candida and got even better. I think mold is a huge issue and you tend to actually grow it inside you when you are around it. The East Coast is the worst, but I don't know how to rectify this problem because I don't feel like moving. I am not well enough, I don't have the funds and I have a job here that I couldn't just relocate because my business has a following. But to answer your question: YES. Mold is so toxic that people get so sick from in and move all over the place to get away from it. Mold makes people deathly ill. It's no joke and there is a whole group of people who believe mold is the whole problem. I don't believe that. No, we have an immune system that can't handle mold, others can be okay with it. Mold can cause so many symptoms. You need to know that. If you are living in that moldy of an environment, you bet you will get sick.

    And not to scare you; but my brain has gotten worse over the years. I have studied or used to so much with CFS, now I feel like I am unable to. I don't have the brain power. People will tell jokes and I don't get them. It's so upsetting because I am smart, but I am not as intelligent as I once was. I was a 4.0 student in college. Something went awry. I am trying to follow so many boards on here that are technical and I can't seem to be able to do so.

    I am so sorry for your struggle. It's awful. Is it possible that you can take pain meds even though you have problems with them? I can not take opiates without an allergic reaction and yet I do it anyway because I have so much pain. Just for this short spell of hell you are going through with your tooth?

    ANOTHER HUG!!:hug:
    Dmitri likes this.
  2. Dmitri

    Dmitri

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    The Spitfire You don't need to apologize! I am aware that majority of CFS sufferers are female (that's what I see from the research available and this forum's demographics, I am not offended or shocked at all by your post :)

    I was this apartment since April 2002, moving in at age 8. Before that, I cannot recall if I had OCD, but I breathed through nose before moving here. A mycotoxin cause is therefore very likely. I really dislike this building. If I die soon, I hope it won't be here. My family can barely afford it at over $1600 per month. Apart from the abysmal, toxic, life conditions here, it is overcrowded (5 people). With constant noise exposure, solitude is so precious. The very scarce opportunities of being alone feel like gifts.

    the strong pain from the tooth surgery is over. Now it's just the usual body-wide agonizing pains and weakness in my head, digestive system, etc. that I'm used to having my whole life.

    Unfortunately, my intelligent and memory did plummet to a noticeable degree. This was very evident in how I did in school for the last two years. I forget very basic things now, whereas my memory was precise and reliable in the past despite how bad my condition was even then. It is hard to grasp abstract topics for me too, now.

    How dangerous does the bathroom infestation look? It was this gross since the first day we moved here. Several futile attempts to eradicate it were made with cleaning agents, the mold recolonizes very fast.

    http://imgur.com/a/riJpY
  3. Misfit Toy

    Misfit Toy Senior Member

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    Dmitri, I so wish you could get out of there to see how you do at being out of there. I wish for an easy answer. Can you leave the window open at all? I wonder if that would make it worse, or better?

    I am so glad the tooth extraction is not causing as much pain. That is a positive!!!

    For some reason, I have this feeling you are going to get better. Better than this. I hope you can get SSD or SSI and maybe you can leave this location at some point.
    Dmitri likes this.
  4. Daffodil

    Daffodil Senior Member

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    I had a friend who developed odd after contracting CFS.
    Dmitri likes this.
  5. Dmitri

    Dmitri

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    Thank you for sharing that, it definitely increases confidence. I tend to trust feelings of this nature.

    I always open the windows in various rooms on intervals throughout the day, in order to refresh the air. The room has to be evacuated during this process, as drafts are one of my top dangers.

    An ongoing problem is the question of which bread to eat. This white flat-bread is hurting my teeth, and I will eventually lose them if I continue eating it. It is the only one I find suitable for my digestion, and I can't live without it. I tried a 100% rye bread, it was perfect in texture, firm and structurally soothing for stomach. The acidity was still above what I could tolerate, it causes dizziness, or if I am more sensitive; visible burn marks on tongue. The only other options I found were ones of mixed white and rye flour. Though they are perfect in terms of pH, I cannot eat them due to their excessively fluffy structure; if I press down on it, it can be compressed into clay. This type of puffy bread hurts my stomach and causes IBS symptoms, I can only eat firm bread, the type suitable for spreading butter etc. on.

    I have no choice but to eat bread. Without this fod, acidity rises too much in my stomach and there is nothing to cushion it from mechanical damage, or to absorb potential irritants that are stronger in liquid form. A few weeks without it led to the sensation of a hole being burnt through my stomach.
  6. CallieAndToby

    CallieAndToby Senior Member

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    Dmitri - I was diagnosed with late-onset PANDAS syndrome - which is an auto-immune disorder that causes OCD. I'm only in phase 1 of treatment - valtrex for positive and active coxsackie A and B. Perhaps it's something to read up on, the only good information comes from Dr. Goodman in Beverly Hills; there are only a few specialists for this. There is one in NJ who I am seeing (by phone only!!!), amazing amazing doctor, like complex cases, very investigatory, very very genius and dr. house like, very kind and humble and nerdy. So shoot me a pm if you are interested in anymore information. The top symptoms are: GAD, OCD, eating disorders (sometimes BDD sometimes just anorexia), and Tics.
    Dmitri likes this.
  7. Dmitri

    Dmitri

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    This doctor sounds more worthwhile than the average because of his inquisitive nature, I am definitely interested. The word "tics" rhythms so perfectly with my brain patterns. Each unwanted flood of thoughts appears to be correlating with my heartbeat, which I prominently feel on the sides of my head. Each pulse triggers what I can describe as tic, a word for a chant, a piece to a pattern shape, or a disturbing image. The pulsation is also strong in stomach, teeth, forearms, and nose. Legs also have pulsation accompanied by a never-ending aching pain.
    ggingues likes this.
  8. CallieAndToby

    CallieAndToby Senior Member

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    Yea I have some of what you are describing. I hope we can both get help. I know how tormenting this is and I've been through some terrible sh** - this really takes the cake! Certain words and thoughts and numbers will trigger tics for me and people will look at me if I'm out somewhere b/c I have trimmers as well; all related to ocd. Also my ocd was a sudden onset, along with the ed's, along with the GAD, along with the movement disorder............what about you?
  9. CallieAndToby

    CallieAndToby Senior Member

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    I also have very very terrible sleeping problems and fatigue. Terrible PEM. That's what makes this whole thing so bizarre and I've had two reputable CFS docs say they've never seen something quite like this, so complex and bizarre.
  10. Dmitri

    Dmitri

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    Sadly, I cannot even remember when the onset of OCD even occurred, whether it was sudden or gradual. The earliest points I can recall were age 10-11. Same goes for the music playing in my head. Before the "earworm", I remember being able to even create music in my head when I was around 6. That is long impossible now, as there is always be music or noises repeating in my head.

    Last month, curiosity led me to trying an online IQ test. The puzzles consisted of shapes, patterns, and dots that bore a striking resemblance to the rituals I have to do, the patterns I have to do with most movements, and sometimes even inside my head. Sequential hand placement, stepping over/between tiles in certain configurations, etc.

    Nights are so tormenting... the pain makes it so difficult to fall asleep, and I continue to during and after sleeping. to make it worse, I even get vivid nightmares, often stronger during drafts. I heard of restless legs syndrome, and I can add it to the thousand disorders I already have list-able.

    I don't want to continue living like this, unless a miracle occurs, I don't expect to live on. If I had to choose the worst part, it would be pain and inflammation distributed throughout my whole body. It is of different flavors, my head usually having painful pulsation and pressure symmetrically where vagus nerve runs through, throat is always sore with mucus gathering, stomach has burning or cramping pain, legs are aching, arms feel drained with dull pain, etc. I do not want to stay alive with this pain, but at least removal of OCD will make my life a lot easier. Every single action hurts and is difficult to perform - breathing, moving, swallowing, thinking. The OCD magnifies a lot of these...
  11. Dmitri

    Dmitri

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    A dental x-ray revealed 9 cavities. I have 3 filled so far out of 8, the last one requires a root canal. One completed filling is being redone due to internal pain when chewing pressure is applied. I am glad the local anesthesia did not cause a reaction the additional times it was injected. The first dental office I visited claimed the bad condition of my teeth is due to a lack of fluoride in the toothpaste I use - a theory that sounds insane for obvious reasons. Other than that, they were very cooperative and understanding. I have an endless list of symptoms, all interconnected and many related to tooth problems. Isolating this one as being caused by a lack of fluoride is ridiculous.

    I suspect the earliest breakouts depleted minerals and stunted the growth of my ribcage and jaw/teeth. My jaw is especially problematic, I cannot close it properly and there isn't enough room for all the teeth - back molars are half buried in gums. With the jagged, weathered, and crowded condition of my teeth; I expect to lose them completely within a few years. I was thinking braces could bring a buffer to some of these symptoms. The x-rays were firstly taken to get them installed, which I hope will happen soon.

    The information regarding hazardous substances such as fluoride and mercury is confusing. They are considered very toxic and will likely be marked by skull and crossbones, stamped with warnings, to be avoided like the plague, etc. Fluoride is added to water supply and mainstream toothpaste, it is virtually unavoidable unless one is wealthy and can afford to rely on bottled water. Mercury can be used in dental fillings and vaccines. When the same chemicals enter one's body internally, they turn magically safe and/or beneficial...

    The pain is intense and relentless. It is unrealistic for me to keep bearing it every day, the easy way out feels more and more inviting as I grow older. There were times in the past when I was able to indulge in science and video games , but the opportunities for those interests are so much scarcer now. Through the endless pain, I spend the bulk of the day either laying down or sitting with this laptop, trying to immerse in music tracks or a looped, soothing sound while drifting through Wikipedia articles. I try to dull the pain in my head by wearing a tight hat or putting it under warm showers, but any relief is minimum. The IBS-D brought with it a very bad pain and throbbing of the nose bridge too, I get an urge to squeeze that area to lessen it. I was about to purchase a 23andme test until I found out that NY banned sending back samples from within the state. I will do it when I have the energy for travelling to an NJ mailbox.

    One question I was forgetting to ask... What are vomiting patterns like in those with CFS? I used to throw up quite frequently when I was very young and on medication. The last time I vomited was during summer 2006 when I consumed some ghastly fast food with Red #40 as an ingredient. Between that event and now, I experienced all sorts of digestive problems but vomiting has not occured.
  12. Dmitri

    Dmitri

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    When I look back at my life, it can be likened to a dark, scary tunnel of pain, and when I try to look ahead, it's the same, with no light in sight. Any notion of death sounds so warm, like breaking out of this tunnel. For the majority of my life, the worst pain was the tension headache; It was always there, spiking in intensity. Now, it's eclipsed by an even more critical sinus headache. The sensation of heartbeat throughout my body is a central symptom. Pain is primarily of throbbing and squeezing type, especially in the face and head. OCD “ticking” patterns also correspond to the pulsation.

    Most foods will aggravate the headache and/or IBS-D even more severely. I can tolerate certain foods for months before a reaction begins to occur, then severe symptoms strike every time I eat it. After a long period of time, “tolerance” to the food may return. It seems to involve complicated characteristics such as texture of food etc. An example with spinach – if cooked by steaming, it would intensify headache, but spinach cooked with dry heat has not done so.

    The never-ending grip of pain will not even allow me to relax, I am better off walking in circles in a room or mindlessly clicking icons on the computer than laying down. I would like to spend most of my time in bed like many with ME do, but I am unable to relax myself into such a state and OCD becomes even more prominent. The degree of restlessness caused by this pain is akin to being burned in hell, there is no rest. Since about age 8 I wanted suicide, but I always had hope for improvement. In 2011, everything became worse as the symptoms magnified, horrible sinus headaches ensued, and IBS-D replaced IBS-C(I wish I was constipated again).

    Most of my day still consists of sporadically repeating actions on a computer screen or walking around a room, applying pressure to my nose-bridge with fingers which the pain compels me to do. I leave the apartment once a week to purchase food, since my mother is more sensitive to cold temperatures and is usually unable to. Lightly squeezing nosebridge and temples is somewhat soothing, similar to why I wear a tight hat for tension headache. I know most people would retort to saying “if you're so sick how can you sit on the computer?” Sometimes I even clench my hand to squeeze the painful pulse. Exercise can lessen the pain and tiredness. It feels as though the increased blood flow from it has a soothing effect, and even the sinus pain becomes temporarily reduced and I get higher thinking capacity.

    Prior to the symptom shift three years ago, there was at least access to entertainment. I was able to have a degree of thinking and maintain hobbies. Now I cannot even enjoy a film, the pain won't let me focus and everything is just irritating to think about. I have access to Netflix and it's currently offering so much worthwhile content, very regrettable that I can't enjoy it. When one suffers, it's hard to imagine a different existence, and whenever I see the alien sight of happy people, I have to remind myself that they live in a different world and the sensations felt in it are utterly different from mine. It's very difficult trying to fantasize how smoothly one's life flows through painless bliss. Every day makes me wonder how no safeguards were evolved through nature against such unnecessary amounts of excruciating chronic pain, but this question is complicated by the fact that my situation is entirely the result of man-made chemicals.

    My most recent regret now is letting my teeth be tampered with. The process of filling all the cavities is still incomplete, and not possible to continue. One filling is painful and won't allow me to chew on the left side(it was redone once with no success). Another temporary one has to be removed, but they won't continue that one unless I agree to a silver filling. Looks like I won't be granted access to orthodontics here and all that was gained from this effort is a mouth full of chemical time-bombs.

    Still, I wonder where OCD fits into this. Those who have it on this forum seem to be a minority. I am certain that I didn't have it at age 5, as I was capable of creating new melodies in my head, which is now impossible due to malfunctioning turbulence of the brain and the “earworm” component of OCD. This suggests that it was caused by something in this apartment or a prednisone reaction in 2001. First dosage made me feel better, full of energy, fluently speak, etc. but the second one caused a severe reaction (It was given by this pediatrician http://www.healthgrades.com/physician/dr-boris-marshalik-xx4nb). Interestingly, he was shocked at first, but then denied everything and said a reaction to the drug is impossible, insisting that I have hysteria and that me and my mother should see a psychiatrist(I almost got sent to one). Of all doctors, this was the most vile and malicious one I encountered.

    I will spend the remainder of my life on experimentation with supposed remedies available, starting with the lowest-risk and easiest available trials.. I am not counting on it, but perhaps a miracle will result. I also want to test for gut flora imbalances and parasites(especially candida). My hypersensitivities to just about everything is the reason why I am so hesitant and careful with any experiments. I am less concerned about the risk factor now due to desperation. As long as I have enough functioning left to take the easy way out, there is truly nothing to lose from failure. I will try to keep this thread updated with results. Oh, and maybe I can perform a first step towards applying for SSI.

    It has been almost 20 years in hell, 3 of them in its deepest reaches. Since I've made it this far, it would be sensible to try every reasonable last resort before finally ending it. Thankfully my parents are separating and moving out of this apartment, that will allow me to find out whether this apartment is responsible for some symptoms. I still think(with the limited capacity I occasionally have) of where I would be, if I were not destroyed by the curse of modern medicine. Surely I was destined for better, if I had such good health and ability to perform remarkable feats during infancy. It would be preferable to just die from reactions to the drugs and antibiotics rather than survive with such horrific wounds to the nervous system, but growing enough self awareness to realize “what could have been” is its own reward, and I am glad that I will die with this knowledge.
    Christopher likes this.
  13. Wayne

    Wayne Senior Member

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    Dmitri, I'm sorry to hear how much pain you're dealing with these days. And what a heavy toll it's taking on you. Your situation makes me wonder if you've ever considered learning how to do coffee enemas (CEs).

    I don't know if you're aware of the story of how CEs first started being used, but it was discovered by German nurses in World War I that administering them dramatically reduced pain for injured soldiers. This became an ongoing effective pain treatment method, as they didn't have access to other pain relievers during war time. They noticed that soldiers healed much faster as well.

    I'm mentioning this because I've dealt with chronic headaches for decades, and recently have been able to reduce the intensity. During some of the worst times, my ability to use CEs to at least temporarily relieve my unrelenting headache pain helped preserve my sanity. I've been able to reduce my head pain more consistently with a diet of green smoothies and other raw foods, like raw goat cheese, raw eggs, etc. I'd say my diet is about 70-80% raw. More recently, my pain notched down a bit further from some liver/gall bladder cleansing.

    In the past, one thing that has helped with some of my pain has been a sinus treatment called "nasal specific" (there's You-Tube videos on this). And then there's rinsing of the sinuses with salt water and/or other specific compound in the flush water.

    I suspect you may already be aware of some of these things, but thought I'd mention them anyway. I hope you can find something that will help you out. As hard as it can be, sometimes all we can do is put one foot in front of the other (metaphorically speaking), and hope for the best. I hope for the very best for you!

    Wayne

    P.S. Whenever I read your posts, I notice what an extraordinarily good writer you are. And wonder how you were able to achieve that at such a young age. You have a gift.
    Dmitri, merylg, helen1 and 1 other person like this.
  14. Dmitri

    Dmitri

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    @Wayne:

    A window of time when I am able to write something of length comes rarely, this led me to question whether my posts are coherent enough. Thank you for the kind word on my writing, it helps make me sure that it is good enough, especially when thoughts are so hard to project and receive.

    I heard word of coffee enemas for IBS on other forums, but haven't researched deeply due to sensitivity to strong agents like coffee. It sounds more promising now that I hear a direct testimonial, and CE treatment will certainly be added to my list!

    And speaking of diet, some foods that made a difference in recent years(I can't always digest them):

    Raw eggs: I'm glad you mentioned these, they made up my main meals for over a year and provided a soothing effect to the stomach due to the “enveloping” consistency. I can't eat them anymore due to heightened sensitivity which rules out liquid foods.

    Butter: This is what allowed me to finish the final year of highschool with minimum passing grades. Even small amounts relaxed stomach to some degree, I would guess due to lubricating qualities. It was very beneficial until fat malabsorption compromised ability to digest it. As I wasn't able to locate a source of quality, raw grassfed butter, I went with Kerrygold brand instead.

    Cod liver oil: Long periods of going on and off this supplement led me to conclude that it was beneficial. Months when I took 1-3 tsp on a daily basis were better than non-CLO months. I typically poured it on bread and it didn't trigger IBS. Unfortunately, it increases headaches now, likely due to an acquired allergy(this eventually happens with every edible)

    Cheese: I prefer mozzarella string cheese for its neutrality. Swiss and Havarti are secondary.
    Most raw cheeses that I tried were too acidic. Together with bread, this makes up the bulk of my food intake with few other options available.

    Bread: The most important consumable because of its soothing texture which probably helps absorb acid and other volatile liquids/particles. Eating it in conjunction with other foods is helpful as it helps buffer any reactions to them. Partially rye bread was ideal during periods of less sensitivity since it had the most comfortable structure and didn't stick to teeth. Now, I can only eat white bread as the former is too acidic.

    Sushi: Raw fish, especially tuna, is an ideal, yet expensive protein source that I rarely have access to. There is storebought tuna, but it becomes soggy and flabby when thawed which is bad news.

    Potatoes: Useful staple, but cannot replace bread.
  15. Christopher

    Christopher Senior Member

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    Have you tried fermented food or probiotics?
  16. Dmitri

    Dmitri

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    I should have added a more concise rundown of my symptoms to my first post, the ones that come to mind , in no particular order:

    - Chronic pain, body-wide
    - Most severe pain in head/face, especially sinuses and sides of head
    - Heartbeat felt throughout body, especially in painful, pulsating regions
    - Increased tension/pain when standing up, with blackening in eyes
    - Orthostatic intolerance
    - Chronic stomach burning, aching, throbbing, cramping
    - IBS
    - OCD
    - Hunger
    - Dryness/dehydration of body(especially mouth and eyes)
    - Excessive thirst
    - Restless leg syndrome
    - Fatigue, lack of energy
    - Inability to relax, severe pain causes restlessness
    - Multiple chemical sensitivity. Medication being the worst trigger
    - Sensitivity to smells, acid, spices, cold, heat, etc.
    - Myopia
    - Throat always hurts and covered in mucus.
    - Difficulty breathing. One nostril always blocked.
    - Mouthbreathing
    - Difficulty and pain swallowing, including saliva
    - Tinnitus
    - Insomnia
    - Dizziness
    - Brainfog, difficulty in reading, concentrating, or calculating
    - Vivid nightmares every night
    - Burning/cramping/aching stomach
    - Scoliosis
    - Pectus excavatum. Ribcage caved in and aching, makes it even more difficult to breathe
    - Brittle nails
    - Overbite, malocclusion. Undeveloped jaw(teeth cannot fit)
    - Tooth decay
    - Brittle nails
    - Peyronie's disease
    - Thinning hair
    - Hairy legs (circulation problem?)
    - Acne/poor skin
    - Eating starch without protein causes sour taste in saliva
    - Low weight
    - Itchy skin and dandruff
    - Sudden dull pains
    - Heartburn
    - Enlarged lymph nodes behind ears
    - Impaired speech
    - Eye discharge
    - Frequent colds


    @Christopher
    All the fermented foods I tried so far were too acidic to be of any aid. I ate yogurt one time last year and it left gastrointestinal burning for a few days. Interestingly, yogurt was something I was able to consume regularly a long time ago, during a period of lesser sensitivity. Acidity did harm me, but the reaction was nowhere near as instantaneous as it would be now. During infancy, I was given kefir because the contemporary lore recommended it for children; and now it states just the opposite.

    I will try concentrated probiotic supplements, and just in case; beginning with a strain that does not produce lactic acid. Someone on this forum recommended mutaflor. Are there any particular brands that you can recommend?
  17. Christopher

    Christopher Senior Member

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    You can't get mutaflor in the US! But I would try a single strain bifido (http://www.natren.com/mm5/merchant.mvc?Store_Code=N&Screen=CTGY&Category_Code=020)

    I'm about to start trying this out and making yogurt from it!
    Dmitri likes this.
  18. Dmitri

    Dmitri

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    Last week, I finally had the opportunity to try cannabis(indica), beginning with a small dose of an edible on the first day. Effects were very subtle at first, and limited to tiredness in my limbs. Falling asleep was slightly easier, though there was an increased tension headache after waking.

    Second day, dosage was doubled. I took it in the evening and only felt something in a few hours when I became sleepy and sinus pain was slightly reduced. Towards the night, this degenerated to a flu-like condition with a strong tension headache. I was able to fall asleep faster, at least. In the middle of the night, I woke up in a critical state with a burning pain throughout my body, extending even to throat and rectum. I struggled to make the trip to the bathroom and back due to extreme vertigo. It was very difficult to maintain balance and not fall, step after step adding to nausea. Tinnitus was much louder than usual too.

    Thankfully, it did not take very long to go back to sleep and most of the exaggerated symptoms subsided after waking in the morning. The days following that gruesome night were better than those prior, because of reduced sinus pain. If it wasn't the direct beneficial effects of cannabis, perhaps the withdrawal from the burning masked the gastrointestinal triggers for sinus headache? Another strange outcome is how it left me with more strength when it comes to exercise.

    Unfortunately, I can't explore cannabis further for now because I cannot afford repeated reactions. For now I can conclude that it was a double-edged sword with the negative and positive side effects.
    Last edited: Feb 25, 2014
    Wayne likes this.

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