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Chronic nightmares + RBD, help needed.

rbd nightmares sleep eds rem sleep behavior disorder sleep quality

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#1 Diesel

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Posted 19 December 2017 - 03:02 AM


I've been having nightmares on a daily basis for the past 8 years. I also yell out profanities and act out my nightmares while asleep. I toss a lot in bed and wake up several times per night. Due to the bad sleep quality, I've also been experiencing excessive daytime drowsiness, severe depression, anhedonia, fatigue, brain fog and significant cognitive deterioration. Sleep disorders are not recognized where I live. There are no centers for sleep study, so I'm on my own to deal with this thing through trial and error.

Right off the bat, I did not experience anything psychological that could cause this disorder. No psychological trauma or mental disorder and my nightmares don't revolve around a certain subject. It's always random. It started quite abruptly with no trigger; I believe something is up with my brain but it's too early to detect on MRI/EEG. I also have symptoms that resemble autoimmunity such as chronic joint and muscle pain, but blood tests for CRP/ESR and ANA are slightly elevated and normal, respectively. 

On very rare occasions (~once a year), I get a random night of super refreshing sleep and for a day all my symptoms improve significantly, so I've come to the conclusion that my symptoms are caused by chronic sleep deprivation-like effect due to chronic, very poor sleep quality.

Rheumatoid arthritis and Alzheimer's disease run in the family, but I'm, perhaps, too young to show overt symptoms if I have any of those. REM sleep behavior disorder (RBD) is an early sign for several neurodegenerative disorders but it can also be idiopathic (60%), so I don't want to jump to conclusions.

Medications that I tried (some with my pdoc, some on my own):
Ineffective or made it worse: Prazosin, Melatonin, Mirtazapine, Trazodone, SSRIs, Alprazolam/Bromazepam. Z-drugs. Carbamazepine. Saint John's Wort. Baclofen. Several antipsychotics. TCAs (Amitriptyline, Clomipramine).

Only 3 medications that worked somewhat are:
1- Pregabalin: Improved sleep quality moderately but I needed 450 mg of it. I'm now down to 150 mg to reduce the severity of the cognitive side effects. Keep in mind that it doesn't improve the nightmares, only the subjective sleep quality or feeling refreshed upon waking up.

2- Venlafaxine: The only medication to block my dreams out entirely. Either I don't get them on it or I fail to remember them upon waking up. Other SSRIs/SNRIs never had this effect on me.

3- Metformin: i don't have diabetes but for some reason it improves most of my symptoms. I've been taking it for weight loss following Olanzapine and I discovered its beneficial effects on my other symptoms by accident. I believe it alters the core underlying pathological cause perhaps via interaction with AMPK or something.

My sleep quality is only a fraction of what it used to be a decade ago, and I'm at my wit's end. 

EDIT: Forgot to mention that all blood tests and hormone profiles are normal.


Edited by Diesel, 19 December 2017 - 03:07 AM.


#2 Galaxyshock

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Posted 19 December 2017 - 02:16 PM

Marijuana decreases REM-sleep, maybe a strain that's purported to induce sleep can be helpful.

 

Lavender oil as aromatherapy can put you into more relaxed and restful state. Orally ingested lavender acts similarly to Pregabalin but is shorter acting.



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#3 Mind_Paralysis

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Posted 19 December 2017 - 05:32 PM

Hmm, you mention how Pregabalin improves sleep quality/feeling refreshed and how Venlafaxine improves nightmares - well... why aren't you still on both drugs then?

 

For what it's worth, I've got something called PLMD - which is basically odd, spasmic movements of large muscle-groups during sleep - this then causes partial awakenings, which keeps me out of Deep stage 4 sleep - Slow Wave Sleep.

 

https://en.wikipedia...vement_disorder

 

Gabapentin, the little brother of Pregabalin, is what works for me, and improves these symptoms to an extent. I do not, however, have abnormally huge amounts of nightmares, the way you do, although I do sometimes act out dreams while sleeping.

Gabapentin does not have the same tolerance-rise as Pregabalin, nor the same discontinuation-effects. 200 mg of GabaP is often enough to get rid of the worst PLDM-symptoms for me, minimizing wake ups to once per night (when under the influence of other drugs that impair SWS, which is almost always) or eliminating them entirely - perhaps GabaP would be a better choice?

 

There's another fellow on this forum whom have chronic nightmares and disrupted sleep - MichaeltheAnhedonic, I believe, and for him, eventually, Gabapentin actually seems to be improving sleep! : )

 

It's sad to hear that your location does not recognize sleep disorders though... sounds like a BARBARIC place! Honestly, there's a crap-load of scientific evidence supporting multiple disorders of sleep - some we actually have neuroimaging to support the findings as well! Not recognizing scientific facts, is like not recognizing the shape of the Earth. (which makes me think you live in Saudi Arabia, since SA's former Grand-mufti sent out a formal bulletin or whatever, that the Earth is, as a matter of fact... flat. *slaps head* - although admittedly he apparently eventually changed his mind... you'd think he would have done so sooner, since Muslim scholars came to the conclusion several hundred years earlier! Gah!)

 

Neuroimaging of Sleep and Sleep Disorders

https://www.ncbi.nlm...les/PMC4179551/



#4 jack black

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Posted 19 December 2017 - 08:34 PM

here is my theory on metformin: you lost some weight and it improved your sleep apnea. what doses are you taking?


Edited by jack black, 19 December 2017 - 08:34 PM.

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#5 Mind_Paralysis

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Posted 19 December 2017 - 10:20 PM

here is my theory on metformin: you lost some weight and it improved your sleep apnea. what doses are you taking?

 

Not a bad conclusion there, Jack - since the OP is in a place that don't do sleep-evaluations, they wouldn't be concerned if he has big problems with snoaring, and hence potential loss of oxygen.

 

@Diesel:

 

Do you have problems with weight-gain? Has anyone commented that you snore? Do you have snoring in the family?

 

In case you don't know, Sleep Apnea is when a malformation in your throat makes it so that when your mouth and neck are in a certain angle, your airways are blocked - this then causes lack of oxygen to the brain whom responds by small arousals to make you shift position and get more air - the result is disordered sleep. It is often cleared up by removal of the tonsils.



#6 Diesel

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Posted 20 December 2017 - 05:02 AM

 

here is my theory on metformin: you lost some weight and it improved your sleep apnea. what doses are you taking?

 

Not a bad conclusion there, Jack - since the OP is in a place that don't do sleep-evaluations, they wouldn't be concerned if he has big problems with snoaring, and hence potential loss of oxygen.

 

@Diesel:

 

Do you have problems with weight-gain? Has anyone commented that you snore? Do you have snoring in the family?

 

In case you don't know, Sleep Apnea is when a malformation in your throat makes it so that when your mouth and neck are in a certain angle, your airways are blocked - this then causes lack of oxygen to the brain whom responds by small arousals to make you shift position and get more air - the result is disordered sleep. It is often cleared up by removal of the tonsils.

 

It's unlikely. I was underweight when this problem started and I had my tonsils removed, when I was a kid, due to recurrent infection. If I miss a dose of Metformin, the symptoms become exacerbated again. Metformin also works for my symptoms during waking hours; it helps depression and anhedonia moderately, but it improves fatigue significantly. That said, I have lost 3 kgs on Metformin.

I'm still symptomatic on 150 mg Pregabalin + Venlafaxine. Higher doses do work very well, but they come with significant cognitive side effects. Both drugs cause profound memory loss, inability to focus or learn anything new, and deep brainfog on a sufficient dosage (300 mg of each). I tried Gabapentin before Pregabalin and it helps on high doses, perhaps it's worth revisiting.

I suspect that my symptoms arise from a metabolic disorder. Although I tested HbA1c before and after taking Metformin and it's normal, my symptoms get worse after eating any carbs. I will begin a ketogenic diet today and see if that helps. Maybe this will allow me to benefit more from the low dose meds.

Today I was having a violent dream and I kicked the wall so hard that I woke up. It's 2 meters away but apparently I lounged at it in my sleep. :/

Oh, and it's not Saudi Arabia, but that's close enough. There is no official statement regarding sleep disorders but since nobody wants to bother building any sleep center I felt like they don't give them any attention. At most, psychiatrists and neurologists deal with such problems through trial and error, while dismissing how severe those problems are.

EDIT: My HbA1c results are 5% before Metformin, and 4.8 (2 months ago). Also, I'm not obese. 67 kg, 170 cm tall.


Edited by Diesel, 20 December 2017 - 05:08 AM.


#7 jack black

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Posted 21 December 2017 - 05:43 PM

 I will begin a ketogenic diet today and see if that helps.



 

 

 

Is it safe to do together with metformin? what dose are you taking?



#8 Diesel

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Posted 25 December 2017 - 09:00 AM

 

 I will begin a ketogenic diet today and see if that helps.



 

 

 

Is it safe to do together with metformin? what dose are you taking?

 

I'm taking 1g nowadays. It's my 3rd day on a ketogenic diet and I don't notice any overt hypoglycemic symptoms from the metformin.

Metformin is supposed to block gluconeogenesis anyway, so as long as I keep my fat intake high and sufficient for my energy requirement, blocking gluconeogenesis shouldn't be an issue. I think the only problem that could arise is if my protein intake is high and fat intake isn't covering my energy requirement, then I'll enter starvation mode and hypoglycemia since my liver can't turn those proteins into glucose via gluconeogenesis.

I'll keep an eye on hypoglycemic symptoms. If a ketogenic diet can improve my issues I won't be needing metformin again either way.

 


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#9 CWF1986

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Posted 26 December 2017 - 10:21 AM

I'm just going to throw clonidine out here for good measure.  Nothing else I've ever taken has been as sure to put me out and keep me in a deep sleep.  



#10 Mileva

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Posted 30 December 2017 - 04:19 PM

take a look:

 

https://blog.allpsyc...earsal-therapy/



#11 csimon02

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Posted 01 March 2018 - 12:26 PM

Diesel, I had a sleep study done and they confirmed that I have RBD. My dad died with Lewy Body dementia, which is something else RBD is a precursor for. Currently melatonin is working for my symptoms. How did the keto diet impact your RBD?

#12 csimon02

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Posted 01 March 2018 - 01:28 PM

Because RBD often leads to Parkinsons/lewy body, I believe this is an early sign that neurodegenetation going on on the substantia nigra.

I'm doing 30 minutes of jogging/eliptical a day, melatonin for sleep. Supps: curcumin, COQ10, vitamin E, b complex. Keto interests me because I believe my issue is inflammation related. My brain fogs up after sugar or heavy carb intake.

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#13 Diesel

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Posted 01 March 2018 - 06:40 PM

Because RBD often leads to Parkinsons/lewy body, I believe this is an early sign that neurodegenetation going on on the substantia nigra.

I'm doing 30 minutes of jogging/eliptical a day, melatonin for sleep. Supps: curcumin, COQ10, vitamin E, b complex. Keto interests me because I believe my issue is inflammation related. My brain fogs up after sugar or heavy carb intake.

Keto made my RBD problem much worse. What helped is cutting down on protein intake. I think in my case there is a direct autoimmune involvement since keto flared up all my joints pain and gave me intense flu-like symptoms.

Now that I'm on a low-protein diet, RBD improved by 25% and the joint pain and flare up of symptoms also improved. Melatonin makes my RBD worse, but Melatonin makes autoimmune diseases worse so that's to be expected.

I don't have money to run blood tests to figure out what autoimmune disease is that but autoimmune diseases DO run in my family, so I'm not surprised.







Also tagged with one or more of these keywords: rbd, nightmares, sleep, eds, rem sleep behavior disorder, sleep quality

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