Invest in ME Conference 12: First Class in Every Way
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Bad CFS crash triggered by severe hypogycemic episode?!

Discussion in 'General ME/CFS Discussion' started by dohertme, Oct 22, 2017.

  1. dohertme

    dohertme

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    I'm wondering if anyone has ever had a bad hypoglycemic attack that led to a CFS crash. I'm trying to piece together what happened to me, and this is the best I've been able to surmise so far (I've been to a ton of different doctors, they all scratch their heads and say they don't know. All blood tests "normal").

    Backstory: I started feeling "a little tired" in high school - when I was 15 or 16. For much of my life, I just felt a bit tired, like I hadn't slept quite enough. This persisted no matter how much sleep I got. I had all the sleep studies - no sleep apnea, or narcolepsy, or restless leg syndrome. Nothing.

    Fast forward to 2005. I had just completed my MA degree, and began my PhD. Brain fog set it, quite suddenly. Before, I could think very clearly and make connections, could read lots of dense philosophy and remember it, I could hold it all in my head long enough to think about it and work with it. Then suddenly it felt like my brain wasn't firing right. Connections weren't being made. Everything felt slow in my mind. It felt like I just couldn't think clearly anymore, and my memory was shot. I'd read the same paragraph over and over - I couldn't concentrate, couldn't remember it. It was a horrible, uphill battle to complete my PhD in 2010. I barely made it.
    At this point I just felt tired all the time, the tiredness had worsened, and I had the brain fog. I was still pretty active, though.

    Then in 2015, I started having low blood sugar issues. I had one really bad attack that, so far as my best guess is, began with low blood sugar and possibly triggered a severe worsening of ME/CFS. That fateful day, I started feeling a bit hungry, then warm, then feeling weak. I felt like I needed to get to food right away, but I was out and it took a long time to get to a restaurant. I became suddenly very weak, I could barely walk, stand, or even sit up unassisted. I had to be practically carried down the street. I couldn't think clearly, I could barely speak. I had that "glazed" look on my face. I looked drunk, probably, and sounded drunk but I wasn't. My heart was pounding, my nasal passages were constricting, my finger tips and around my tongue started tingling. My mouth was bone dry - not a drop of moisture in it.

    I got to a restaurant and drank 3 glasses of orange juice. At that point, things didn't get "worse" but I didn't snap back to normal. If it was just low blood sugar, I should have been fine. My friend called an ambulance, and by the time it got there they said my blood pressure was normal and my blood sugar was normal. Of course, we don't know what it was before I drank all that orange juice. They brushed it off and trivialized my symptoms and told me I was probably just dehydrated and to go home and drink vitamin water. I was really not capable of thinking clearly, I couldn't advocate for myself, so we got in a cab and went home.

    I drank bottles of gatorade and ate protein bars. My mouth was and still was bone dry - not an ounce of moisture, like cotton. It remained bone dry for hours, no matter how much I drank. I could barely sit up. I had to lay down and not move or speak. Even speaking pushed my body to the point of intolerance. I was incredibly weak, like a little old lady. I didn't have the strength to open the plastic twist off lid of those gatorade bottles. 6 hours after getting home, and drinking all this vitamin water, my mouth was still bone dry, I could hardly speak or sit, I felt an awful full body illness type feeling, could barely move, was so weak I was like 100 years old. We went to the emergency room. They did a CBC and an ER panel, all tests came back perfectly "normal." They gave me a couple IVs of fluids and told me to go home. I didn't feel "as bad" as before but I was by no means normal. My brain still wasn't working right, I wasn't thinking clearly, so I signed myself out.

    Walked home at a slow shuffle - normally I would speed walk wherever I went (family being from NY and all!). For days and weeks, even months, after "the incident" I had to walk very, very slowly. I felt an overwhelming illness with any physical exertion. Going up and down the stairs was hard, walking a few blocks down the street was hard, just talking and having a conversation was hard. And exercising? Forget it! Instead of feeling good post-exercise, I just felt terribly ill and had to lay down. Sometimes laying down, not moving and not talking, for 30 minutes would be good. Sometimes I had to lay there for 3 hours before I felt like I could get up.

    In the beginning of the post "incident" aftermath, it felt like the "steadycam" inside my brain wasn't working. When we walk, our brains usually make it so that our visual field appears stable. We don't really "see" our surroundings moving up and down, even though when we walk, technically our eyes/head are moving up and down. But that just went away. Everything around me seemed to be moving around a lot, especially things further from me and it was very disorienting. This has gotten much better over the last couple years, thankfully.

    Similarly, I started having "micro-moments" of feeling like I was falling backwards. Just a split second, randomly, and then the sensation goes away. I also began to have a weird "visual disturbance" - it looks like white noise of light in front of my eyes, all the time. Like the static on old televisions - little crawling ants of light on the surface of everything I see.

    I've had every blood test under the sun. They've ruled out MS, thyroid issues, vitamin deficiencies, Addison's, Lyme Disease, etc. All blood work has come back perfectly "normal" but it's been over two years since "the incident" and I've never fully recovered. I can still barely exercise. It feels like my body just can't produce muscle anymore. I try to do light yoga and strength training and not only does it not seem to lead to any progress, it usually makes me feel physically worse.

    Still, I probably have it "easy". Now at over two years later, I can mostly function again. I'm still tired all the time, and still muddle through my brain fog and memory issues, and I can't lead the active life I once did and have had to give up doing so many things that brought joy to my life. But - most days I can get up out of bed and move around and walk "normal speed" and run errands and see people. I'm just tired and run down through all of it, there's no real "vitality," and I still have set backs where there only thing that will help is that I need to lay down and not move.

    I've never pursued any type of treatment because no one has ever told me there really was any. In fact, no one has every been able to explain what happened to me 2 summers ago, nor has anyone made any connection between the on-going fatigue I always had and the "crash" the "incident" caused. I'm wondering myself if the bad hypoglycemic attack can actually cause a severe worsening of CFS.
     
    MeSci and Mel9 like this.
  2. ukxmrv

    ukxmrv Senior Member

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    Have you been tested for POTS or similar OI disorder?


    The crash you described at the start and the OJ sounds very much like what happens with me.

    I had a TTT in the end to pinpoint exactly what was happening. A BP test after the event isn't going to pick it up sadly.
     
  3. dohertme

    dohertme

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    I'm trying to get a TTT scheduled right now! I was supposed to have one last week, but got sick with a cold and am trying to reschedule it.

    @ukxmrv what happened with your crash and the OJ that was similar?
     
    Last edited: Oct 23, 2017
    ukxmrv likes this.
  4. mariovitali

    mariovitali Senior Member

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    @dohertme

    Did you have any of the following tests?

    -Total Bile Acids
    -Transketolase
    -Ceruloplasmin
    -Zinc
    -Copper
    -Fibroscan (Liver Elastography)
    -Hba1c
    -Glucose Tolerance Test
     
  5. dohertme

    dohertme

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    Hi @mariovitali - I'm not sure. It's hard for me to translate all this. My test results are listed as follows:

    12 lead EKG/ECG
    Vit D 25-hydroxy
    thyrotropin
    comprehensive metabolic panel
    CBC w/ diff & platelets
    EEG awake & asleep
    MRI brain non infuse
    Vit A (free retinol)
    Vit. B12
    Anti-DNA doublestranded AB
    Antinuclear AB
    Tissue transglutaminase IGA, IGG antibodies
    POC glucose
    Hemoglobin A1C (POC)
    Glucagon
    Cortisol
    ACTH
    Insulin antibodies
    EBV-VCA, IGG & IGM
    Insulin
    C-Peptide
    C-reactive protein
    ESR, Westergren
    CK
    Hepatitis B Surface antigen
    Hepatitis B Surface antibody
    HCV C Ab screen with reflex to viral load
    Renin
    Aldosterone
    Creatinine, UR
    Metanephrines, UR
    Vanillylmandelic Acid, 24 HR urine

    And a few of these (like the CBC, Cortisol, ACTH, thyrotropin) were repeated 2-3 times to recheck.
     
  6. AdamS

    AdamS Senior Member

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    This story sounds astonishingly similar to mine. I also had a number of hypoglycemic attacks before my big crash around a year ago. I’ve found that this low blood sugar feeling often precedes a crashes and if I don’t sit/lay down and consume food/carbs/sugar when it happens I feel horrendous and sometimes relapse leaving me bedridden for a few days/weeks.

    I was diagnosed with POTS via Tilt Table Test, the only thing that has helped me with POTS/ME really is pacing with a HR monitor as suggested by Dr Klimas and consuming electrolyte drinks like Coco Vita/Nuun to keep blood volume up.

    Sadly we just don’t have answers yet, but great work is being done and we’re getting closer. It is believed that people with ME have issues metabolising sugar. It sounds like you’re doing relatively well at managing considering your situation, keep pacing well and your capacity could continue to increase slowly.
     
  7. dohertme

    dohertme

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    @AdamS - well at least I know I'm not the only one! Your post-crash symptoms were the same? Or at least similar? Did your doctor tell you at the lack of prompt recovery after low blood sugar is due to POTS? Or is that a separate but unrelated thing?

    Have you tried any special diets? Some other folks are telling me about the ketogenic diet but I don't know much about it yet. Something about ME-CFS being a neuroimmune disorder and about the brain not metabolising energy properly.
     
  8. Ruthie24

    Ruthie24 Senior Member

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    I have had severe crashes triggered by hypoglycemic episodes (documented by blood tests) as well as being triggered by severe reactions on tilt table tests. I have come to the conclusion that anything that stresses my "system"' (autonomic issues, hormonal, illness etc) can cause me to have a severe crash that will last for at least a week and sometimes months.

    I am curious if you have been tested for Sjogren's Syndrome? There is a blood test that can be done looking for autoantibodies. If that is negative, they usually do a minor salivary gland biopsy to check for lymphocyte infiltrates that can indicate the disease. Given your severe dry mouth, it might be worth looking into. I know my POTS neuro thinks a lot of his patients have undiagnosed Sjogren's.
     
  9. Murph

    Murph :)

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    I've never had a crash caused by hypoglycaemia alone. But I've often had crashes where exercise/activity has led to low blood sugar and then all the PEM symptoms .

    What I definitely do find is I can ward off pem by supplementing with carbs during the day. I also take whey and I feel like they're great complements. I somehow suspect that when the bloodstream is coursing with energy, the body can normalise its metabolism.

    It is well known that the metabolic switches in the body, AMPK and mTorc, are nutrient sensors. I wonder if something as simple as low blood sugar could turn off normal metabolism and throw us into a hypometabolic state (and whether that might be what PEM is!)
     
    Molly98 likes this.
  10. AdamS

    AdamS Senior Member

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    Haha true! Yeah, prior to my first big crash, I was having low blood sugar episodes maybe once a month but recovering from them quickly - within 30 minutes infact, I noticed this for around 2 years. Then one time (much like yourself) I just didn't recover and now I have ME/POTS. I was at the gym training chest when this happened so perhaps the increased metabolic demand pushed my body too far. I was groggy and felt like I had come down with something that week too.

    As for it being POTS related, i'm not sure. My specialist didn't really say POTS was the cause. You may be interested in the work of Chris Armstrong, he did a presentation recently about sugar metabolism in ME:

    Re Ketogenic diets, I tried it for about 8 weeks and found it to be good for my stomach ache/bloating but ultimately unhelpful. I'm a firm believer in eating a balanced diet and usually do best eating carbs. In fact, in the summer just gone, I was able to play 9 holes of golf 3 times with friends by drinking Lucozade Sport/Coconut Water to keep my blood volume/sugar at a reasonable level. This might not sound like a lot but it was quite a nice little victory for me!
     
  11. dohertme

    dohertme

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    @Ruthie24 Yes I also am beginning to think that the bad hypoglycemic episode I had just overwhelmed my body and I just didn't recover from it! I haven't been tested for that I don't think, but my eyes aren't dry, so that's probably not it... (and my mouth was really only terribly dry on the day of the incident itself...then reverted back to normal. If only the *rest* of me reverted back to normal!)
     
  12. dohertme

    dohertme

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    @Murph that's a very interesting idea, about the link between CFS crashes and our metabolism being wonky. I need to learn so much more about this. I just need to get to an actual CFS specialist!
     
  13. dohertme

    dohertme

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    @AdamS - I think that could very well be it, regarding what you said about the increased metabolic demand. The fateful day of my big crash, I had trained a martial art very hard that morning (something I just can't do anymore), hadn't gotten a lot of sleep, drank too much coffee to compensate for the lack of sleep, and just didn't eat enough during the day. I think I was too active and my blood sugar plummeted and my body couldn't handle the actual hypoglycemic attack that followed.

    A couple folks have mentioned coconut water...why does that help?? Too bad I don't actually like the stuff, but maybe I should start forcing myself...

    And thanks for the link - very interesting!
     

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