Hypersomnia/asleep again and again

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Hi,

I have CFS since 2013 but initially I just used to shutdown or fall asleep post physical activity but in 2016 I started having hypersomnia after starting paroxetine 20 and then now it worsened with me shutting down/falling asleep again and again suddenly for 10-15 mins even without physical or mental activity though I feel fresh afterwards. Is this common with CFS or I need to check for narcolepsy. I do have excess sleep or hypersomnia issue. Other diagnosis small fiber neuropathy, chronic pelvic pain with overactive sympathetic nervous system. Please let me know what helps (supplements etc.) with excess sleep and sudden sleep issue. I'm on provigil.

Regards,
Tom
 
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@Mary @Hip @Sushi @Learner1 @ljimbo423 ...Can someone please help...would BCAA and D-Ribose help for excess sleep/shutdown as I guess it is tied to my severe fatigue. Also I get horrible burning sensation in stomach accompanied with weakness/sleepiness after bowel movement..how to minimize this horrible symptom? I am scared of going to washroom.

Regards,
Np
 

ryan31337

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Hi @Nadirtopinnacle,

Its worth considering if your problems are related to food consumption. I experienced this sort of complete shutdown, improved by a short refreshing nap that you describe (alongside many other symptoms) and for me it was reactive hypoglycemia, seemingly brought about by gastric dysmotility. Before an endocrinologist diagnosed that I had had polysomnography/MSLT to exclude sleep disorder and narcolepsy.

Its something that is increasingly noticed in those with POTS - you don't mention POTS but with a diagnosis of CFS, SFN and sympathetic overdrive I would be very suspicious. My issues were greatly improved by adopting a high fat, low carb diet, which can combat dumping.

Check this out and see if it fits:

Cheers,
Ryan
 
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@ryan31337 Thanks. Much appreciated. I was thinking about insulinoma. As I read many dumping syndrome patients were misdiagnosed and it was eventually discovered they had insulinoma diagnosed by blood and CT with contrast. Any thoughts on it?

Regards,
Np
 

Mary

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@Nadirtopinnacle - are you still taking paroxetine? This study acknowledges a link between hypersomnia and paroxetine, but the point of the study was to decide whether this hypersomnia should be considered a good thing or a bad thing Their finding was that paroxetine-induced hypersomnia is a good thing. Right. I would not be at all surprised if the study authors had ties to the drug industry.

Paroxetine can also cause fatigue. I don't know if it can cause your digestive issues.

My niece took it for 4 years. She said she wasn't depressed while on it, but she didn't feel much either - it made her numb.

If you're still taking paroxetine, I think it might be good if you investigated more about the drug and possibly look into getting off of it. I and many others here can't tolerate prescription anti-depressants. There are lots of supplements and vitamins which can help with mood. Prescription ADs can have so many unwanted effects - I won't call them "side" effects, because they are actual effects.

would BCAA and D-Ribose help for excess sleep/shutdown as I guess it is tied to my severe fatigue.
I don't know. If you're still taking paroxetine and if it is the cause of this excessive sleepiness/shutown, I don't think that BCAAs or d-ribose would help that much, though I could be wrong.

And I just looked up Provigil - http://www.beatcfsandfms.org/Drugs/Provigil.html
Some of its rarer effects include gastroenteritis, GI disorder and somnolence.
 
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ryan31337

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@ryan31337 Thanks. Much appreciated. I was thinking about insulinoma. As I read many dumping syndrome patients were misdiagnosed and it was eventually discovered they had insulinoma diagnosed by blood and CT with contrast. Any thoughts on it?
I'm afraid I don't know a great deal about that. I wonder if an insulinoma would consistently show low blood glucose on fasting tests? Whereas with dumping a fasting blood glucose sample is usually normal (and indeed quite hard to get low glucose results at any point because the reactive hypo still self-corrects). I'm sure its all very nuanced and not worth trying to guess without a knowledgeable Endo's help...

My endo said in an ideal world he would perform an extended mixed meal tolerance test (glucose & insulin monitoring), which may shed some light on the reactive hypos. But as it was clear I had POTS and signs of GI dysmotility there was a good chance it was dumping, so it was easier/cheaper to just try and slow digestion with fat and remove the carb load - which worked a treat.

Ryan
 
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@Nadirtopinnacle - are you still taking paroxetine? This study acknowledges a link between hypersomnia and paroxetine, but the point of the study was to decide whether this hypersomnia should be considered a good thing or a bad thing Their finding was that paroxetine-induced hypersomnia is a good thing. Right. I would not be at all surprised if the study authors had ties to the drug industry.

Paroxetine can also cause fatigue. I don't know if it can cause your digestive issues.

My niece took it for 4 years. She said she wasn't depressed while on it, but she didn't feel much either - it made her numb.

If you're still taking paroxetine, I think it might be good if you investigated more about the drug and possibly look into getting off of it. I and many others here can't tolerate prescription anti-depressants. There are lots of supplements and vitamins which can help with mood. Prescription ADs can have so many unwanted effects - I won't call them "side" effects, because they are actual effects.


I don't know. If you're still taking paroxetine and if it is the cause of this excessive sleepiness/shutown, I don't think that BCAAs or d-ribose would help that much, though I could be wrong.

And I just looked up Provigil - http://www.beatcfsandfms.org/Drugs/Provigil.html
Some of its rarer effects include gastroenteritis, GI disorder and somnolence.
@Mary you mentioned about supplements and vitamins can help with depression and mood. Can you suggest some supplement and vitamins for same?

Regards,
Np
 
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@Nadirtopinnacle - are you still taking paroxetine? This study acknowledges a link between hypersomnia and paroxetine, but the point of the study was to decide whether this hypersomnia should be considered a good thing or a bad thing Their finding was that paroxetine-induced hypersomnia is a good thing. Right. I would not be at all surprised if the study authors had ties to the drug industry.

Paroxetine can also cause fatigue. I don't know if it can cause your digestive issues.

My niece took it for 4 years. She said she wasn't depressed while on it, but she didn't feel much either - it made her numb.

If you're still taking paroxetine, I think it might be good if you investigated more about the drug and possibly look into getting off of it. I and many others here can't tolerate prescription anti-depressants. There are lots of supplements and vitamins which can help with mood. Prescription ADs can have so many unwanted effects - I won't call them "side" effects, because they are actual effects.


I don't know. If you're still taking paroxetine and if it is the cause of this excessive sleepiness/shutown, I don't think that BCAAs or d-ribose would help that much, though I could be wrong.

And I just looked up Provigil - http://www.beatcfsandfms.org/Drugs/Provigil.html
Some of its rarer effects include gastroenteritis, GI disorder and somnolence.
Thanks for the information. I have stopped taking paroxetine long back. I'm focusing more on immune mediated hypersomnia or neurogenic inflammation driven hypersomnia. I feel I'm drunk whole day. Propranolol 20 helps sometime with excess sleep,may be like ked to my overactive sympathetic system?

Regards,
Np
 
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I'm afraid I don't know a great deal about that. I wonder if an insulinoma would consistently show low blood glucose on fasting tests? Whereas with dumping a fasting blood glucose sample is usually normal (and indeed quite hard to get low glucose results at any point because the reactive hypo still self-corrects). I'm sure its all very nuanced and not worth trying to guess without a knowledgeable Endo's help...

My endo said in an ideal world he would perform an extended mixed meal tolerance test (glucose & insulin monitoring), which may shed some light on the reactive hypos. But as it was clear I had POTS and signs of GI dysmotility there was a good chance it was dumping, so it was easier/cheaper to just try and slow digestion with fat and remove the carb load - which worked a treat.

Ryan
Thanks. So you are suggesting I should try keto diet (high fat + low carb) for few weeks and see how my body responds?

Regards,
Np
 

Mary

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@Mary you mentioned about supplements and vitamins can help with depression and mood. Can you suggest some supplement and vitamins for same?

Regards,
Np
Hi @Nadirtopinnacle - here are some things that might help with depression and mood:

5-htp or tryptophan - help the body produce serotonin; 5-htp helps me with sleep at night
low omega 3's can cause depression, so make sure your levels are optimal
low vitamin D is associated with depression
low folate and B12 are linked to depression - see: https://www.ncbi.nlm.nih.gov/pubmed/15671130
A recent study also suggests that high vitamin B12 status may be associated with better treatment outcome. Folate and vitamin B12 are major determinants of one-carbon metabolism, in which S-adenosylmethionine (SAM) is formed. SAM donates methyl groups that are crucial for neurological function.
SAMe is also used to treat depression, and folate and B12 are needed to make SAMe.

These are the things that come to mind right now.

-
 

Mary

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Thanks for the information. I have stopped taking paroxetine long back. I'm focusing more on immune mediated hypersomnia or neurogenic inflammation driven hypersomnia. I feel I'm drunk whole day. Propranolol 20 helps sometime with excess sleep,may be like ked to my overactive sympathetic system?

Regards,
Np
Sorry, I don't know the answer to that. I do think most of us here have an overactive sympathetic nervous system, which can cause insomnia (at night) among other things. I haven't heard of it causing hypersomnia however, but that doesn't mean there's no connection - I just don't know what it might be.

I also don't know anything about neurogenic inflammation unfortunately.

But what comes to mind is monosodium glutamate, or just glutamate. Glutamate is an excitotoxin. Many of us, including me, are hypersensitive to MSG and most of us have sympathetic dominant nervous systems. MSG can cause insomnia and all sorts of symptoms. And MSG and its cohorts are in almost all processed food, so at dinner I can't have anything that's processed or I get severe insomnia.

So I'm just wondering if there's any relation between your neurogenic inflammation and glutamate. This is just a guess, there may be nothing to this. But MSG affected me badly for many years, only I didn't know that it was causing my bad insomnia. Other people get headaches with it, all sorts of things.

I hope you find some answers!
 

ryan31337

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Thanks. So you are suggesting I should try keto diet (high fat + low carb) for few weeks and see how my body responds?

Regards,
Np
Hi @Nadirtopinnacle,

I don't think you need to go to extreme lengths right away. To begin with I would keep a food & sleepiness diary and see if meals high in carbohydrate lead to a more severe episode of sleepiness & symptoms - meals like jacket potato or pasta would hit me like a wrecking ball.

You could then try substituting 1 meal a day with a low carb alternative - perhaps an omelette with green veg for lunch, for example. If you stop crashing after those low carb meals it might be worth thinking about adopting a low carb or very low carb ketogenic diet.

Good luck,
Ryan
 
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Hi @Nadirtopinnacle,

I don't think you need to go to extreme lengths right away. To begin with I would keep a food & sleepiness diary and see if meals high in carbohydrate lead to a more severe episode of sleepiness & symptoms - meals like jacket potato or pasta would hit me like a wrecking ball.

You could then try substituting 1 meal a day with a low carb alternative - perhaps an omelette with green veg for lunch, for example. If you stop crashing after those low carb meals it might be worth thinking about adopting a low carb or very low carb ketogenic diet.

Good luck,
Ryan
Thanks @ryan31337. Will work on it. Did you have burning sensation in stomach worsened post bowel movement and improved after eating something. My Gastro is saying it is colitis and GERD possibly due to gut dysbiosis leading to all this. My Endo appointment is scheduled after over a month till then I'll try low carb keto diet and maintain diary to check for flare ups. Burning is so severe after bowel movement that I literally guzzle cold water to douse the fire in belly and rub my stomach until I get relief after eating something post bowel movement. May be need to eat something prior to bowel movement?

Regards,
Np
 
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Sorry, I don't know the answer to that. I do think most of us here have an overactive sympathetic nervous system, which can cause insomnia (at night) among other things. I haven't heard of it causing hypersomnia however, but that doesn't mean there's no connection - I just don't know what it might be.

I also don't know anything about neurogenic inflammation unfortunately.

But what comes to mind is monosodium glutamate, or just glutamate. Glutamate is an excitotoxin. Many of us, including me, are hypersensitive to MSG and most of us have sympathetic dominant nervous systems. MSG can cause insomnia and all sorts of symptoms. And MSG and its cohorts are in almost all processed food, so at dinner I can't have anything that's processed or I get severe insomnia.

So I'm just wondering if there's any relation between your neurogenic inflammation and glutamate. This is just a guess, there may be nothing to this. But MSG affected me badly for many years, only I didn't know that it was causing my bad insomnia. Other people get headaches with it, all sorts of things.

I hope you find some answers!
@Mary Thanks for the information. Vitamin D levels are proper. I'm on vitamin B12 due to neuropathy.. burning symptom. I'm on low dose folate as well. You are right MSG worsens my neuropathy symptoms as well increasing pins and needles. Too much of folate is linked to cancer so keeping it low. Also, are you following up on PDH enzyme thing? I'm referring to recent ME/CFS 2018 conference at Standford where Dr. Ron and other researchers discussed about various findings related to PDH enzyme and other findings including related to metabolic trap. But participants were warned about some experiments with something? I am not sure about this. I am waiting for clip to be posted on YouTube. Is anyone you know whom I can connect to on this forum to discuss more about the same?

Regards,
Np
 

ryan31337

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Hi @Nadirtopinnacle,

I can relate to the feeling of heat/inflammation that would travel down my gut over a day or 3 after a bad reaction to food. For me bowel movements didn't aggrevate it, eating would though, so sounds a little different.

I certainly had/have SIBO/dysbiosis/GERD and all associated symptoms are much better when avoiding carbs and especially FODMAPS.

Ryan

Thanks @ryan31337. Will work on it. Did you have burning sensation in stomach worsened post bowel movement and improved after eating something. My Gastro is saying it is colitis and GERD possibly due to gut dysbiosis leading to all this. My Endo appointment is scheduled after over a month till then I'll try low carb keto diet and maintain diary to check for flare ups. Burning is so severe after bowel movement that I literally guzzle cold water to douse the fire in belly and rub my stomach until I get relief after eating something post bowel movement. May be need to eat something prior to bowel movement?

Regards,
Np
 
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I get this is medication or food related for me. I ussually stop all medications, let the brain imflamtion come down then I restart so I can make sure is the meds, I do this 3 times to be 100% what it is, then eliminate or increase more slowly.
I had it happen with LDN and I didn’t want to give up on it. When I restarted lower took me 2 years to go full dose without side effects. I couldn’t afford the symptom becuase I had to keep my job.
 
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@Inester7
In my case burning gut, pain in gut with worsening of weakness, irritability and anger triggered after starting LDN but I have stopped LDN for long now. But my symptoms have not improved. Diet yes it is key trigger but I tried elimination but nothing worked. I read that inflammation is linked to circadian disorders. Any hacks. I am on Provigil to keep my self alert. I also have to work to support family and struggling daily and asking for death.

Regards,
Np