Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Hunger, neurotransmitters, out of sorts, etc. ???

Discussion in 'General ME/CFS Discussion' started by confetti11, Mar 19, 2017.

  1. confetti11

    confetti11 Senior Member

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    Hello everyone,

    I'm hoping something in my story will jump out to someone and I can figure out my latest setback.

    I've had CFS for 17 years. With many years of ups and downs, since 2012, I've been doing okay. Working full-time, etc. Still had trouble with traveling, but went most days with minimal symptoms. Anytime I had setbacks during this time, I was able to pull myself out (with my doctor's help).

    Since mid-late 2016, I've been sliding backwards. It seemed to bottom out in January after I had a simple cold (mild fever, congestion, etc. It was my first cold in years). Not sure if some immune system reaction triggered what I'm dealing with now/was the straw that broke camel's back.

    My main symptom right now is just generally feeling unwell. I can feel nauseous suddenly and out of sorts-if you know what I mean by that. Sometimes a malaise. Affected greatly by heat. Have bad taste in mouth sometimes. Fatigue has not really been a factor. I just generally feel uneasy almost all the time. Oh, and generally emotionally defeated (I lost both parents in the last year, I'm single and had a stressful, demanding job).

    One other thing that is peculiar and very bad right now: extreme hunger (sometimes with nausea). Sometimes accompanied by no appetite. This hunger is an extreme gnawing sensation that most likely mimics hunger from what I can tell. I don't think it happens really when I'm actually hungry. This was one of the first symptoms to start bothering me last October. But it was sporadic and seemed to happen only at night. Now it's every day. Sometimes all day. It can be really debilitating.

    I see a good CFS doctor and take tons of supplements, get regular IVs, etc. I have for years. I do acupuncture, homeopathy, etc. We've tried the typical things to help this that have benefited in the past, but nothing so far has worked.

    The doctor just gave me a very low dose of Selegiline to try (2.5 mg daily) to increase dopamine, in case a low level is making me feel defeated. I also tried CBD oil in the last few days.

    Today, I woke up with even more nausea than usual. A different kind of nausea, and I'm crawling out of my skin I feel so uneasy. I'm not sure if the 1.25 mg Selegiline made me feel worse today, if CBD oil isn't for me, or if I'm just feeling bad regardless.

    I'm looking again at methylation in my google searches today. I've worked on this in the past because of that gene issue. The nature of my symptoms feel like they are based in my neurotransmitters. I'm tempted to look more into the GI with a gastroenterologist, but something tells me that the hunger/nausea sensations are rooted in my brain balance and that they'd likely find nothing wrong with my stomach. This latest episode that started last year began after an extremely hard and exhausting week at work, exposure to a new home for work every day since then (off-gas?), and my dad dying after my mom died less than a year earlier.

    Does anyone see clues I'm missing? Especially in terms of neurotransmitters?

    Thanks!
     
  2. mirshine

    mirshine Senior Member

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    Wow, i'm so sorry to hear about your mam and dad.

    I think I can understand your clawing hunger explanation. For me though the clawing is in my head. It feels like an alien like creature trying to claw out. I think it's part of my depression.

    Not sure if that is anything similar. It just struck a chord with me.

    I hooe you figure out what it is x
     
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  3. Mary

    Mary Senior Member

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    @confetti11 - first, I'm really sorry to hear about your parents. That would be very rough for anyone. I think your defeated feeling very likely could be a normal reaction to losing both your parents so close to each other. Also, your "stressful demanding job" could be a factor too. The answer may not be a drug. Do you have support for dealing with these issues?

    Liver toxicity can cause a bad taste in your mouth and nausea, as well as malaise, lack of appetite and feeling unwell in general, and it also affects emotional wellbeing. At one time I had a major problem with toxins and my liver - my blood work was fine - but my chiropractor who does muscle testing found my liver was overloaded with toxins. It seemed to stem from chemical exposure I'd had many years before at a job. I did a liver detox and got much better. I also started taking milk thistle.

    And the Selegiline can cause liver problems - look up the "side" (actual) effects, so it may not be the best thing for you right now.
     
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  4. belize44

    belize44 Senior Member

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    I can relate to the irritability; I sometimes feel as if I would like to rip my skin off and crawl right out of it. For a long time I was waking in the middle of sleep, feeling ravenous. I started taking Glycine before bed and that stopped the annoying hunger at inconvenient times. Lately I had my adrenals tested and found that my adrenals were crashing in the middle of the night so maybe that was signaling hunger to begin. I don't know if this would help you or not! Have you seen a natural doctor? The one I am seeing now takes a natural approach and is a DO (doctor of osteopathy.)
     
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  5. confetti11

    confetti11 Senior Member

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    Thanks for your response and about my parents. It's a very skin crawly feeling.

    Thanks for your response. I don't have a lot of support in general being single and dealing with this alone for almost 20 years. You know you have to watch how much you wear people out, especially if they aren't family. I do have a counselor. My job isn't an issue anymore because I was let go just the other day. Now the stress will come in trying to make enough money doing something else because it paid well. But I got a severance, so I should be okay for a little while. It was very stressful and became defeating to go to work because of so many changes at work (less and less autonomy), but I'll miss everyone because I was there almost four years. Ultimately, I'm not sad to lose that job because of the increasing stress. Thanks for the reminder about liver issues. It could be a cause definitely. I think I'll try some juicing again and maybe try milk thistle. I also think I will cut back on the CBD oil and stop selegiline for now because I don't know if it is making things worse or not.

    Hey, thanks! I know I hate that out of sorts feeling. My doctor is integrative so we approach from many angles. I've done heavy adrenal work all 17 years. We were kicking around the other day (doctor and I), if it was the adrenals/cortisol driving the hunger. It's not just at night so I'm not sure. I was thinking since then there may a hypoglycemia component, so I've been experimenting with eating every 2 hours or so. It may be a chemical reaction causing it, and not really be from my stomach like I said before. I'm also wondering today if I'm herxing from the CBD oil because there's a lot of talk of that on the internet and I'm VERY sensitive to all medicines/supplements usually.
     
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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    CBD can alter how quickly other drugs are metabolized; it affects cytochrome p450. Ordinarily one should only try one new supplement or drug at a time. Even discounting any interaction, you don't know if your symptoms are caused by selegiline or CBD because you're taking them both at the same time.

    https://www.google.com/search?q=cbd cytochrome p450&ie=utf-8&oe=utf-8

    If there is an interaction, you could be exposing yourself to higher levels of selegiline than if were just taking selegiline by itself.
     
  7. confetti11

    confetti11 Senior Member

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    Oh, that's a good point about CBD altering other drugs. I actually didn't start them at the same time. They are the two newest ones though, however. CBD oil was first. Didn't notice a huge difference. Only took one dose of selegiline and then the bad day I had today. Was wondering if it was a delayed negative response to CBD, or perhaps die off from CBD. Or if it was from a single dose of selegiline. I'm going to stop both and only add CBD back in, in a smaller amount. After I feel some better. I've got to figure out the hunger/nausea thing too. That's been around a lot longer than these two treatments for me. And the most debilitating. Thanks.
     
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  8. Skippa

    Skippa Senior Member

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    Hi, I'm sorry to hear you are suffering.

    All I can add is that when I've tried any supp/med that interferes with dopamine on some level, I experience EXACTLY that crawling skin/feeling very strange sensation. And my extremeties "feel very peculiar" too.
     
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  9. Dmitri

    Dmitri Senior Member

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    I have that same sensation of hunger, and I can't tell apart the feelings nausea and hunger, since I've had this all my life. If I don't eat every few hours, I begin to feel overwhelming gnawing in the stomach, nausea, lethargy and food cravings. This is relieved by eating, but then the food causes an excruciating burning pain, so it becomes a matter of alternating the suffering. The hunger-nausea is especially bad upon waking.

    I think the reason is more likely to be indigestion/gastroparesis rather than a disbalance with neurotransmitters or hormones. The stomach won't empty, which causes the food and acid to putrefy and remain for prolonged hours. It would explain why food relieves it, because eating might cause the stomach to finally empty the contents of the previous meal. I will be having an endoscopy to get further clues next month. Despite the risks, it might shed some valuable light.

    The rest of the symptoms are very familiar to me too. I find that whatever goes on in the stomach has a strong effect on my overall state.
     
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  10. caledonia

    caledonia

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    My suggestion if the other things don't work, would be a stool test to see what's going on with the gut bacteria.

    If anything is found, the test should tell you what drugs or herbs will be effective against the bad gut bug.

    Doctors Data is a good test, and this site is a reliable one I've used before:
    http://www.integrativepsychiatry.net/gastrointestinal_tests.html
     
  11. confetti11

    confetti11 Senior Member

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    Thanks for the feedback. Yes, for me it's less about the physical sensation of crawling than I just don't want to be in my skin because I'm so uncomfortable. Crawling out of it seems like about the only way!

    Thanks for your response. I'm so sorry you've been dealing with this awful sensation your whole life. Sometimes mine gets so bad that I lose my appetite. Sometimes it's unaffected. This started about six months ago sporadically. The reason I wonder if it's brain signal related is it started after some major physical/emotional stress. Doctor also thinks it could be acid reflux/heartburn which I first thought it was. I was also kicking around if it's reactive hypoglycemia. I feel it may be strongly adrenal related because of how/when it started. I've had an endoscopy in the past but it's been a long time.

    Your last statement though...yes, 100%. However my stomach is acting ruins my day or allows me to get along okay. Lately it's just been getting worse so I don't know what to do.

    I woke up today not quite as nauseous as yesterday. I'm really wondering if one of the drugs I started didn't cause the extra bad day. But, when I woke at 8:30, I had some apple and almond butter. Then I laid back down for a while. My stomach started burning about 30 minutes or so later. It felt like hunger. There's no way it could be since I just ate. Now it's a few hours later and my stomach is still burning. If I had to get up and tackle life outside of the house right now, it would turn to burning/nausea, and I would be fighting not to get sick all day.
     

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