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Chronic health issues: confused about what to do next

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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    Fantasma wrote: »
    Perhaps you should take a break, and stop thinking too much. Try sleeping more, 8 hours at least, get a car, thus reducing the use of your bike at least to once a week.

    Alas, I'm still working on my license.

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    NotYouNotYou Registered User regular
    Purely from my personal experience, cut out the caffeine as well. I had chronic fatigue until I did so. Somehow, my body developed a kind of allergy to caffeine where it would make me tired and almost light headed. It's possible something similar happened to you? At least give it a shot.
    k-maps wrote: »
    NotYou wrote: »
    Purely from my personal experience, cut out the caffeine as well. I had chronic fatigue until I did so. Somehow, my body developed a kind of allergy to caffeine where it would make me tired and almost light headed. It's possible something similar happened to you? At least give it a shot.

    That's interesting, it's the one thing I haven't tried. Paradoxically, it's also the only thing that makes me feel remotely better. I might give it a shot, but it's going to suck. I don't drink a lot in volume, but do so very consistently.

    The withdrawals can be shitty, but it's not like heroin or anything. You'll get some headaches and you'll feel extra tired for a week, and then you'll gradually get better.

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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    Okay back from the appointment.

    Right off the bat she had me do a bunch of blood work: CBC, EBV, Toxoplasmosis, possibly thyroid, and some weird virus I've never even heard of. They did the bloodwork on the spot, which was nice, and I've already tested negative for mono. She skipped the STDs (since unfortunately it hasn't been a risk for about 6 months... :-\), which was also nice, and made some sort of point of there being a difference between East coast and West coast doctors (?). The East coast being more pedantic, maybe?

    She recognized I have a rudimentary understanding of science with my background and so didn't feel the need to talk down to me, and actually explained her reasoning for the tests, which was refreshing to say the least. But, most importantly she picked up on the possibility of me having some sort of chemical sensitivity of or relating to grilling byproducts (mostly CO obviously, but possibly other toxins?) This is related to incidents to which I was exposed to relatively higher levels of CO due to stupid people and shitty ventilation. Before you go "well duh, you probably have CO poisoning" there's a reason I didn't bring it up. It wasn't an obvious case where the levels were so high that I was about to pass out, and so I didn't want to be reinforced in my hypochondriac inclinations.

    She's now trying to get me in with a specialist while ruling more obvious causes. So far I'm "happy" with the results of this appointment

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    foodlefoodle Registered User regular
    Sounds like things went well with the new PCP. That's good.

    Since you are in the middle of trying to diagnose this, I would strongly suggest you not make any changes to your routine behavior. So this whole suggestion about getting off caffeine should be tabled until your PCP has done her work. You don't want some change in your diet masking what is really going on.

    If there is a CO issue, remember that if you're cycling on regular roads, you're being exposed to a lot of CO (and other bad stuff) from the car exhaust fumes.

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    foodlefoodle Registered User regular
    edited July 2013
    NotYou wrote: »
    The withdrawals can be shitty, but it's not like heroin or anything. You'll get some headaches and you'll feel extra tired for a week, and then you'll gradually get better.

    Since some of his primary symptoms are headaches and tiredness, he wouldn't want caffeine withdrawal masking (or exacerbating) what his core problem is. I would suggest waiting on working on the caffeine issue until after he and his PCP have worked out what the core issue is. It does not sound like caffeine is the core problem.

    foodle on
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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    foodle wrote: »
    Sounds like things went well with the new PCP. That's good.

    Since you are in the middle of trying to diagnose this, I would strongly suggest you not make any changes to your routine behavior. So this whole suggestion about getting off caffeine should be tabled until your PCP has done her work. You don't want some change in your diet masking what is really going on.

    If there is a CO issue, remember that if you're cycling on regular roads, you're being exposed to a lot of CO (and other bad stuff) from the car exhaust fumes.

    I avoid them as much as possible. My avoidance of toxins borders on that of germophobia, so it is exquisitely ironic that this would even happen to me.

    The fun part now is to figure out my job/school as I navigate through this fascinating medical drama. This is not the first time my health or personal life has interfered with my ambitions this year, that I'm starting to believe that these Job-like tribulations are trying to tell me something.

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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    UPDATE: got a referral to a neurologist and a sleep specialist. ceres, it seems she picked up on neuro without me having to explicitly ask for it, but let's hope it's something more "benign" like sleep apnea.

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    ceresceres When the last moon is cast over the last star of morning And the future has past without even a last desperate warningRegistered User, Moderator mod
    I had a sleep study done once. By the time I was all greased up I didn't feel much like sleeping.

    Good luck with it. :)

    And it seems like all is dying, and would leave the world to mourn
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    MorblitzMorblitz Registered User regular
    This isn't advice, but I just wanted to pop in and wish K-maps good luck!

    3DS Pokemon Y Friend Code: 0645 5780 8920
    Please shoot me a PM if you add me so I know to add you back.
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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    Thanks, I really hope I learn something. I'm tired of everything being so vague and ambivalent.

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    mtsmts Dr. Robot King Registered User regular
    while i am sure every doctor hates someone coming in and telling them they have a disease it does sometimes work out.
    a couple years back i was having major stomach pain and constipation etc. doctor had no idea what to do, thought it was an allergy thing. i did some research and a lot of my symptoms were similar to gall bladder issues. asked my docotr about them, and not being sure where to go with it, ordered the test, and it turned out my gall bladder wasn't functioning well and had to come out.

    granted i do have my doctorate so i was able to research it well, but intuition does pay off sometimes

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    UncleChetUncleChet N00b Lancaster, PARegistered User regular
    @k-maps while my comparison isn't directly identical it is medical. Due to insurance and personality issues, i went through about 6 psychiatrists in less than 2 years. Each time, I'd have to go over a med list that did/didn't work. what I was willing/unwilling to try, my symptoms, etc. Usually every other one would want to give me an all new diagnosis and or med-cocktail. What I had to do was, write down symptoms, write down meds, write down my cycles (bipolar sucks) and then convince them on top of everything else that while I exhibit symptoms of both bipolar 1 and bipolar 2, I get to be That much more special and have bipolar-mixed, which some claimed didn't exist.
    Now, I've been w/the same VA doctor for about 8 months. He listens well, he advises even better, and most of all, he's willing to work with me, versus dictate to me.

    So, go in prepared, and be ready to stand by what you have experienced. Armed with good information, the dr can do their job that much better.

    I'm sometimes grumpy and random, feel free to overlook the strange man in the corner.
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    foodlefoodle Registered User regular
    mts wrote: »
    but intuition does pay off sometimes
    I would think your experience shows that research pays off, not intuition.

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    bsjezzbsjezz Registered User regular
    edited August 2013
    there's definitely reason to give caffeine a break, especially if you're not making any other immediate habitual changes. coffee is one of my great indulgences too but if i don't monitor it - if it lapses from a low, routine dose (usually a home-brewed double espresso... mmmm) into more or less than that - i get headaches. at the very least i'd keep a journal of your caffeine intake and any headaches, especially if you don't drink the same amount at the same time every day.

    caffeine's a drug and in the concentrations found in coffee, for example, it can be a powerful one. when it comes to headaches there's a strong and not fully understood connection: caffeine is, for example, both an implicated cause and solution to migraine headaches. it acts in strange ways with painkillers and as it's also a stimulant, it's not negligible in your particular case of concentration and fatigue problems in conjunction with headaches.

    when i take a break from coffee i usually struggle to justify drinking it again, because i broadly feel that much better. but i do, in the end, because i'm a sucker for immediate indulgence.

    bsjezz on
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    k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    bsjezz wrote: »
    there's definitely reason to give caffeine a break, especially if you're not making any other immediate habitual changes. coffee is one of my great indulgences too but if i don't monitor it - if it lapses from a low, routine dose (usually a home-brewed double espresso... mmmm) into more or less than that - i get headaches. at the very least i'd keep a journal of your caffeine intake and any headaches, especially if you don't drink the same amount at the same time every day.

    caffeine's a drug and in the concentrations found in coffee, for example, it can be a powerful one. when it comes to headaches there's a strong and not fully understood connection: caffeine is, for example, both an implicated cause and solution to migraine headaches. it acts in strange ways with painkillers and as it's also a stimulant, it's not negligible in your particular case of concentration and fatigue problems in conjunction with headaches.

    when i take a break from coffee i usually struggle to justify drinking it again, because i broadly feel that much better. but i do, in the end, because i'm a sucker for immediate indulgence.

    I reluctantly mostly agree with your assessment. But, in the past I experimented with cutting caffeine out completely. I did feel A LOT WORSE before feeling A LOT BETTER, but that's because I was drinking obscenely strong homemade percolator coffee at the time. I cut it down to a < 1 cup (~12 oz.) drip coffee max (which I never finish), and now I don't get headaches when I quit, but just feel maybe a little groggy. I'll admit that it's nice to stop every once in a while, as it feels like I'm giving my body a break, but I'd be surprised if it could make that huge of a difference.

    My symptoms come in 3-5 week intervals, and generally I can live like a saint when they start and it won't change jack shit, but when they're not active I could abuse my body (treat sleep as optional, eat inconsistent not-so-awesome food, work all day everyday, etc.) like many people my age and leave completely unscathed. At any rate, I suppose it won't hurt to give it a shot, but it would suck that even at my relatively young age, my only fairly benign vice of drinking 3/4 12 = 9 oz. cup of shitty black coffee every morning (or three tea bags), is punishable by weeks of headaches and fatigue.

    P.S. - I'm scheduled for an MRI sometime this week, and will probably see a sleep specialist next week to rule out sleep apnea. I couldn't quite read the neurologist, but he was pretty much "WTF, why didn't you do an MRI already?" It was weird, he latched on to the headaches but didn't give any ideas as to what it could be, or how it would cohere with my other symptoms and their onset patterns. I suppose there is no real harm in doing the test, so I didn't voice any objections.

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    bsjezzbsjezz Registered User regular
    k-maps wrote: »
    At any rate, I suppose it won't hurt to give it a shot, but it would suck that even at my relatively young age, my only fairly benign vice of drinking 3/4 12 = 9 oz. cup of shitty black coffee every morning (or three tea bags), is punishable by weeks of headaches and fatigue

    it's not really like that, though; sure, you might find out that by whatever sad quirk of the genetic lottery you're strongly suceptible to the effects of caffiene, and as such you have to avoid it or learn to consume it more carefully. but even so, if you do find that breaking away from coffee allieviates some of your symptoms, you now know they're not big, mysterious problems, but just your body's adverse reaction to a drug you choose to take; they'll be easier to overcome and forget about because you have an understanding of the cause. that's a psychological hurdle out of the way, and a step towards - self-efficacy, i suppose? a confidence that the problem can be dealt with.

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    KarrmerKarrmer Registered User regular
    I'd also agree with trying to cut out caffeine, just to see how you do afterwards... assuming the doc doesn't fix it before you need to try that.

    I'd also say going Paleo or gluten-free isn't at all radical and is definitely worth a shot if the doc can't seem to make much progress and going caffeine free doesn't do much. Wheat and gluten can cause a lot of issues for people, even if they aren't celiacs. Worth trying if you run out of options, imo. It sure helped me out.

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