Severe Insomnia - 3 years - Mushrooms? Ketamine?

[Hannah1]

My 19-year-old son has had M.E./ CFS since getting Glandular Fever 3 and a half years ago. He is housebound and socially isolated other than close family but his worst symptom is insomnia. He takes Zopiclone to sleep most nights and only occasionally manages to sleep without it - albeit latent, restless, disrupted sleep. He does a lot of meditation and breath work, doesn't nap during the day, follows all the sleep hygiene protocols - sunlight in the morning etc., and does NLP exercises to help calm and maintain a positive outlook.
With the meditation and NLP, there have been improvements in his daytime slightly 'wired' feeling - he mostly feels calm, but hardly ever feels sleepy.
It is like his brain never gets the signal to sleep.
The interesting thing is we have tried various alternative treatments and supplements and sometimes they work for a time but within a few days to a week the insomnia returns.
The latest thing we are trying is Mestinon/ Pyridostigmine. This was prescribed to him by a specialist because he gets venous pooling in his feet. The medication did make him feel calmer during the day and after taking it for a week or so he did start to sleep at night. For almost a whole week he slept well without sleeping tablets and then the insomnia started to return.
This seems to be the pattern and makes it seem as though new treatments work by distracting his 'brain'. Consequently, he can sleep for a while until his brain makes sense of it and then it is back to being 'switched on'. I realise that this is just me creating some narrative to try to make sense of what is going on and, likely, this is not at all what is actually happening.

We wonder if he is in some sort of perpetual flight or fight state, however, my sense is that it is more complex and nuanced than this. Despite this, we wonder if Ketamine of psilocybin mushrooms might help in some way. Ketamine because it can help with the fight-flight thing and psilocybin because it can assist with brain plasticity. Neither of these things are easily available in the country where we live.

I understand that M.E. comes in many different forms, however, is it true that there are two distinct groups? Those that 'sleep' a lot and often dose, and those that simply never feel tired and just get progressively more wired until they need pharmaceuticals to help. If this is the case it would seem that these are quite different symptoms or very different manifestations. I have tried to read all the science but somehow I can never retain or adequately comprehend.
Anyway, I would appreciate any clues anyone may have.
p.s. we have tried low-dose anti-depressants - amitriptyline and mirtazapine but my son couldn't handle the feeling these gave him and they didn't seem to help much with sleep.

 

[cfs since 1998]

I tend to cycle back and forth between insomnia and hypersomnia. I try to avoid basically everything if I'm feeling over-stimulated.

I know this doesn't answer your question, but, there is research going back to 1985 suggesting that post-mononucleosis (glandular fever) patients with chronic symptoms have an impaired immune response against Epstein-Barr virus (1,2,3). I would strongly consider an antiviral if you haven't already, however I'll note that I started too quickly and made myself quite a bit worse with that strategy. I do have the antibody pattern described by Borysiewicz in 1986 (2), as my EBNA IgG is missing entirely.

1. Tosato G, Straus S, Henle W, Pike SE, Blaese RM. Characteristic T cell dysfunction in patients with chronic active Epstein-Barr virusinfection (chronic infectious mononucleosis). J Immunol. 1985 May;134(5):3082-8. PMID: 2984282.

2. Borysiewicz LK, Haworth SJ, Cohen J, Mundin J, Rickinson A, Sissons JG. Epstein Barr virus-specific immune defects in patients with persistent symptoms following infectious mononucleosis. Q J Med. 1986 Feb;58(226):111-21. PMID: 3012622.

3. Reinke P, Knops M, Hanitsch LG, Meisel C, Volk HD, Scheibenbogen C. Deficient EBV-specific B- and T-cell response in patients with chronic fatigue syndrome. PLoS One. 2014 Jan 15;9(1):e85387. doi: 10.1371/journal.pone.0085387. PMID: 24454857; PMCID: PMC3893202.

 

[ilivewithcfs]

I'll share what helped me with my severe insomnia. I hope you find it helpful.
I got ME/CFS after severe respiratory infection, and that's when my trouble sleeping began. I tried many supplements+sleep hygiene, but nothing worked. Eventually my doctor put me on 100 mg of fluvoxamine and 50 mg of clozapine at might. It worked really well. My sleep stabilised and I also started to feel somewhat better overall. Things stayed that way for about 9 years.

Couple of months ago I tried choline to treat my CFS, and it caused serious insomnia even after I had given up this supplement. About a week ago I started inositol 1500 mg before bed, and my sleep normalized. Hope it stays that way.

So, to sum it up, I found fluvoxamine, clozapine and inositol very helpful. Fluvoxamine and clozapine might make people drowsy in the beginning, but side-effects go away in a couple of days/weeks.

One more thing... Zopiclone is not the type of drug you should take long term. I also found it very addictive and difficult to stop. I won't take it ever again.

 

[Florida Guy]

Insomnia has been my main problem for a long time and its worse with cfs/me. I have tried many different things, thc works, etizolam but only once every 9 days and occasionally other things which don't work very well on their own. I need something that works that I can take every so often. Taking anything every day seems to make it stop working.

So, to sum it up, I found fluvoxamine, clozapine and inositol very helpful. Fluvoxamine and clozapine might make people drowsy in the beginning, but side effects go away in a couple of days/weeks.

Please tell more about dosage for those two? Are you taking 100mg of f and 50mg of c every night? You say the drowsy effect goes away? But that is the effect I need. How long have you taken these and do you take them each day? They both sound a little dangerous in wikipedia.

Zopiclone is not the type of drug you should take long term. I also found it very addictive and difficult to stop. I won't take it ever again.

Agreed. I do have some in my stash along with other z drugs and benzos but I don't take them except maybe once a year when I get really upset or some major thing happens and I know I'll never get to sleep. But something that works well that could be taken 2 or 3 times a week would be a godsend.

 

[ilivewithcfs]

Please tell more about dosage for those two? Are you taking 100mg of f and 50mg of c every night? You say the drowsy effect goes away? But that is the effect I need. How long have you taken these and do you take them each day? They both sound a little dangerous in wikipedia.

I take 100 mg of fluvoxamine with dinner every day and 50 mg of clozapine an hour before bedtime every day. When I said, that the drowsy effect goes away, I meant daytime drowsiness, I've been taking these pills for about 9 years and they've been helping me with insomnia consistently without side-effects.

There were times, where I reduced my dosage of clozapine to about 12,5 mg, but due to various circumstanses I had to increase the dosage to 50 mg once again recently.

I understand, that they might sound dangerous, but I chose to take them anyway. Without them I'm suicidal and non-functional. These pills are better than suicide. Also, the dosages I'm taking aren't high at all, all the dangerous side-effects are more likely to happen with medium or high dosages. I think, that if these drugs were doing major damage to me, I would've noticed it by now. 9 years is a long time.

 

[JES]

In general I have the same experience as thread starter referred to in that I can find things that "distract" my brain for a while, which makes my symptoms temporarily better until there is a return to steady state within 3-7 days usually.

I don't have insomnia so much as delayed sleep onset, but antihistamines are something you could explore perhaps if you haven't already. Less side effects and addiction potential than sleep medications, but effect may vary. The antidepressant mirtazapine works similarly mostly on histamine receptors at lower dose and *may* help with sleep with potentially little other side effects.

About antivirals, I tried acyclovir/valacyclovir and they made my sleep worse.

 

[Wayne]

We wonder if he is in some sort of perpetual flight or fight state, ... I would appreciate any clues anyone may have.

Hi @Hannah Gower -- I'll share a recent experience I've been going through for the past 6-8 weeks or so, culminating in my being able to sleep 8 hours last night, got up for 2 hours this morning, and then napped for another 3 hours or so. Perhaps it will offer something that could be useful for your son.

So... I'm a person that went from sleeping a lot in the early years of my CFS, to eventually having a difficult time sleeping. About 6-8 weeks ago, I experienced a number of severe startles, mostly induced by sudden loud sounds, that sent my neurological system into overdrive (to say the least).

Those "sound traumas", besides making my sleep more difficult, greatly exacerbated many of my health issues, like dysautonomia, proprioception dysfunction, vertigo, frenzied brain activity, brain fog, zapped willpower, strong feelings like I was "unraveling", often feeling I was on the verge of experiencing tremors or seizures, and more. I think much of it could be attributed to fight or fright reflexes being activated, and then being unable to deactivate.

I doubled down on many things that have worked for me over the years, from biocircuits, Egoscue Tower, stretching, energy balancing techniques, meditation (contemplation), various kinds of sound therapy, etc. Many of these "tried and true" techniques actually seemed to initially exacerbate things. In the past week they started to ever so slowly start working again, and I actually felt I was "starting" to recover from a weeks long episode of intense neurological discombobulation.

And then our kitty let out a loud, piercing meow about 11:30 pm the night before last, and I was immediately back to "square one". Which is not quite accurate, because when I woke up yesterday morning, I truly felt "torn asunder", and worse off than ever. I felt absolutely desperate. I began to think of anything that had worked in the past, that I had not yet tried in the past few weeks. I then remembered castor oil packs.

I've used them in the past, and eventually discovered a very easy way to do them. Simply rub some castor oil on the skin (most advise over the liver and solar plexus), put on an old t-shirt, and apply a hot water bottle on top of it--that's it. I put the castor oil on my solar plexus all the way up to my neck, an area that inwardly felt like it was in a state of intense trembling. -- Some proponents say a hot water bottle is not a necessity, and can still work without them. They say this makes them an easy night-time therapy (while sleeping).

After about half an hour, my system began to feel like it was beginning to let go. Shortly afterwards, I was able to fall asleep. I awoke feeling MUCH better. I got up, almost shocked at how much better I was doing. After about 2-3 hours, those improvements began to fade, so I repeated the castor oil regimen. I again fell asleep. When I got up, I felt immensely better for the rest of the day.

I slept quite well last night for 8 hours, woke up extremely sleepy, and then slept another 3 hours from mid-morning till noon. As I sit here typing this, it feels like "something has broken". It also feel like a great deal of harmonization has taken place, with my sympathetic and parasympathetic nervous systems. This kind of harmonization is something that Edgar Cayce often mentioned when he recommended castor oil packs.

Anyway, that's my story. I feel better at this moment than I have for the past two months. This therapy is so simple and so inexpensive (and for me extremely effective), that it might be worth trying for others who have a problem sleeping (@Mary - @lenora) or relaxing. Hannah, I hope your son can discover something that greatly helps his situation. -- Best to All...

P.S. It' kind of hard for me to believe I had not thought of doing castor oil packs the past two months, as I've mentioned them 30-40 times here on PR in the past 15 years. Here's a LINK to all those posts I made. The following is my favorite castor oil story:

Velma is a seventy-two-year-old woman who had a hysterectomy in 1965. The surgery seemed to have been all right, but since the operation—for the past twenty-three years—she has experienced constant gaseous distention, constipation, abdominal "miseries," edema of the ankles, and episodes where her gut would feel as if it were twisting in on itself. These periods would sometimes last for hours.​

​

After being seen as a patient in our office, she was instructed on how to use a castor oil pack. She was faithful in following instructions and came back for a recheck in just two weeks. She told us that within minutes after the very first pack was placed on her abdomen, she felt as though the gut inside the belly wall untwisted on itself. Since that time, there has been absolutely no recurrence of symptoms. She has no twisting sensations, her ankles are no longer edematous, and her abdominal "miseries," constipation, and gaseous distention are gone.​

 

[junkcrap50]

Trazadone seems to work well in ME/CFS patients. Worked for my insomnia.

Someone I know tried 5-6 sleeping medications and none worked, including the super powerful Xyrem (which is literally GHB, the date rape drug!). But Trazadone helped them. So it's worth I try I think and pretty easy to get a Rx of it.

 

[Florida Guy]

I take 100 mg of fluvoxamine with dinner every day and 50 mg of clozapine an hour before bedtime every day. When I said, that the drowsy effect goes away, I meant daytime drowsiness, I've been taking these pills for about 9 years and they've been helping me with insomnia consistently without side-effects.

That sounds very interesting. I will try to obtain those two. If 9 years with no bad side effects and it still works, that sounds like a miracle. Definitely worth a try. I will check my usual sources to see if they have this.

Antihistamines produce tolerance after a while and stop working. They say long term use increases the risk of alzheimers and brain tumors https://www.news-medical.net/health/Long-Term-Effects-of-Taking-Allergy-Medications.aspx and unfortunately, trazadone does not work for me or didn't last times I tried it

Simply rub some castor oil on the skin (most advise over the liver and solar plexus), put on an old t-shirt, and apply a hot water bottle on top of it--that's it. I put the castor oil on my solar plexus all the way up to my neck, an area that inwardly felt like it was in a state of intense trembling. -- Some proponents say a hot water bottle is not a necessity, and can still work without them. They say this makes them an easy night-time therapy (while sleeping).

I will try this first since its safe and cheap. There should be no long term toxicity though we all know lots of things work for some and not all. Ideally I want something that will work every night forever but so far, everything produces tolerance eventually. I would certainly settle for 3 things I could use each one day out of 3 and possibly avoid tolerance.

One of the things that help is to let go of everything and watch your breath. I tell myself "down, down, down" as I imagine myself slowly sinking into the warm bed. I notice that I'm getting closer to sleep and finally it happens. That works long as I've taken something that works. Without taking something, I can go weeks and possibly months without sleep or just a couple hours a night. Its fairly miserable so I always have to take something

 

[heapsreal]

I wouldn't call zopiclone addictive, more like reliant on it for sleep. In saying that I know a few cfsers who had terrible sleep and were scared of addiction to sleeping tablets. Their sleep never improved and for many their quality of live deteriorated.
If you've had cfs for a few years and bad insomnia for a few years, why reduce your quality of life if there's a medication that can help.
Some people will say they don't sleep much but will get 6hrs plus sleep a night. I wouldn't even call that moderate insomnia. You start getting 5hrs or less a night regularly than I'd be finding whatever I can to sleep. Side effects of sleep medication is alot less than never getting more than 5 hrs of sleep a night.
Another argument I hear is that sleep quality on meds isn't very good. Any sleep is better than no sleep. I don't think anyone's cfs is going to improve unless they are getting regular sleep.
Tolerance can be an issue, which is why I think it's important to have several meds to select from an alternate between them.

 

[Springbok1988]

I have tried just about every sleeping medication available and a lot of supplements to get some sleep. Everything either didn’t work or had too many side effects (like daytime sleepiness). I now take Sonata + gabapentin 2x per week and the rest of the nights I take Quviviq + gabapentin. If I take Sonata everyday then it stops working. If I take Quviviq everyday then it builds up and I start getting sleepy during the day. Sonata and Quviviq only work for me if I take them with gabapentin. I still somewhat frequently struggle falling asleep or waking up during the night but my sleep is so much better than without these meds.

 

[crussher]

I have found drinking oral rehydration solution before bed (I use Normalyte) effective at helping me sleep. I can get this feeling of 'not enough blood reaching my brain' at night and at the time a weird, vacant wired feeling. Boosting my blood volume diminishes that and improves my chances of getting a good night.

 

[Mary]

@Wayne - thanks so much for the detailed instructions on using a castor oil pack! I tried making one years ago, following Casey's instructions, and it was so messy I never tried it again. It involved flannel (?) and I think a plastic sheet and maybe something else. But your method sounds easily doable! Still a bit messy maybe but much easier to manage I think - definitely worth a try!

I did try trazodone a couple of times and disliked it intensely. It made me extra tired the next day (even at low doses) and I did not feel like myself and it did not help much with sleep either. I don't get along well with prescription anti-depressants.

 

[Blazer95]

I'll share what helped me with my severe insomnia. I hope you find it helpful.
I got ME/CFS after severe respiratory infection, and that's when my trouble sleeping began. I tried many supplements+sleep hygiene, but nothing worked. Eventually my doctor put me on 100 mg of fluvoxamine and 50 mg of clozapine at might. It worked really well. My sleep stabilised and I also started to feel somewhat better overall. Things stayed that way for about 9 years.

Couple of months ago I tried choline to treat my CFS, and it caused serious insomnia even after I had given up this supplement. About a week ago I started inositol 1500 mg before bed, and my sleep normalized. Hope it stays that way.

So, to sum it up, I found fluvoxamine, clozapine and inositol very helpful. Fluvoxamine and clozapine might make people drowsy in the beginning, but side-effects go away in a couple of days/weeks.

One more thing... Zopiclone is not the type of drug you should take long term. I also found it very addictive and difficult to stop. I won't take it ever again.

citalopram in the morning also sleemed to stabilize MANY of my issues like sleep, pain, anxiety and even the weired feeling to some extend.

we also know that LDA (wich induced dopamine) relieves lots of symptoms in some.

makes me think that lots of symptoms are caused by a progredient dopamine and serotonine loss in ME patients.. (of course its not the only issue).

 

[Wayne]

Still a bit messy maybe but much easier to manage I think - definitely worth a try!

I will try this first since its safe and cheap. There should be no long term toxicity though we all know lots of things work for some and not all.

Hi "Guys" -- Just a bit of a heads up that castor oil applied topically to the skin is purported to significantly improve lymphatic drainage. If true--which I assume it is--then it could potentially cause a detox reaction, perhaps similar to the detox reactions that pw/ME/CFS experience when doing Perrin techniques.

As I recall, sometimes it doesn't take much to get a pretty intense effect. I did another "round" of topical castor oil this morning, and have noticed my brain fog was almost off the charts for most of today. It's getting better tonight, and I hope it's better than normal tomorrow. Aaahh, hope springs eternal.

Anyway, I touched on this subject in THIS POST which has more information on it, plus a link to a woman who claims castor oil packs and their accompanying lymphatic drainage (and more) is what totally turned her extremely serious health issues around. I highly recommend watching 3 minutes of that video from where I start the playback. -- She never said she had ME/CFS, but she sure had a lot of symptoms of it.

 

[Hannah1]

I don't have insomnia so much as delayed sleep onset, but antihistamines are something you could explore perhaps if you haven't already.

Do you have an idea of what antihistamines people go for? Mirtazapine is an option. We tried once before but it could have been the combination of things going on at the time that meant he didn't like the effects. Thanks

 

[Hannah1]

Without taking something, I can go weeks and possibly months without sleep or just a couple hours a night. Its fairly miserable so I always have to take something

This is how it is with my son - he just goes on not sleeping, not even napping. I think Mirtazapine will be our next port of call

 

[Hannah1]

I wouldn't call zopiclone addictive, more like reliant on it for sleep. In saying that I know a few cfsers who had terrible sleep and were scared of addiction to sleeping tablets. Their sleep never improved and for many their quality of live deteriorated.

Thanks for this. I have been worrying about the Zopiclone but we have tried so hard not to do pharmaceuticals (and tried many other things) and if it wasn't for the Zopiclone I hate to imagine where we might be. It would be good to have a few alternatives though.

 

[Hannah1]

I now take Sonata + gabapentin 2x per week and the rest of the nights I take Quviviq + gabapentin.

Thanks. Our doctor was hesitant to prescribe Gabapentin because of the suicidal ideation thing. I also know someone whose daughter was affected adversely in this way. I guess the effects on any individual are unknown until tried. Did you have any side effects?

 

[Hannah1]

M

I do have the antibody pattern described by Borysiewicz in 1986 (2), as my EBNA IgG is missing entirely

My son does have the EBNA antibodies or at least he did up to a year afterwards. I have read about antigens left behind by viruses being a problem but I do antivirals impact antigens?