Insomnia after PEM crash?

[Andielyn]

Hi all,

I had a PEM crash that began last Sat/Sun and lasted through Wednesday. Yesterday I felt much better, went to work, then last night I had bad insomnia, despite my usual bedtime routine. I have gotten my insomnia under much better control in the last few months since seeing a sleep specialist and starting a new sleep regime. I've had one other bout of bad insomnia since then (was still awake when my hubby got up at 4 am) and looking back I think it may have been after a crash. Anyone else experience this? ~Andielyn

 

[geraldt52]

I have gone through this scores of times. Whenever I am in a crash, I sleep...well, as well as I ever sleep. When I first start to recover from the crash, I will lay awake all night, sometimes for a couple of nights, before I get back to "normal". Obviously brain chemistry, but never figured anything to do about it but wait it out.

 

[Andielyn]

I have gone through this scores of times. Whenever I am in a crash, I sleep...well, as well as I ever sleep. When I first start to recover from the crash, I will lay awake all night, sometimes for a couple of nights, before I get back to "normal". Obviously brain chemistry, but never figured anything to do about it but wait it out.

@geraldt52 Wow, interesting! I will have to track it more closely in relation to my crashes...I haven't made the association until now. Thanks for your input...extremely helpful! ~Andielyn

 

[sarah darwins]

Obviously brain chemistry, but never figured anything to do about it but wait it out.

May be just me, but the one thing that does help a bit for me is taking in plenty of electrolytes when I'm in, or coming out of, a crash. I keep a bottle of electrolyte concentrate around and during/after crashes I drink a few glass of water+concentrate during the day. I seem to get far less of those 'twired' insomnia problems then.

 

[Andielyn]

May be just me, but the one thing that does help a bit for me is taking in plenty of electrolytes when I'm in, or coming out of, a crash. I keep a bottle of electrolyte concentrate around and during/after crashes I drink a few glass of water+concentrate during the day. I seem to get far less of those 'twired' insomnia problems then.

Thanks @sarah darwins I will have to look into electrolyte concentrate because I don't drink sports drinks at all. I pretty much only drink water/sparkling water, and nothing with any artificial sweeteners of any sort. This is all so helpful and enlightening! I have just recently been officially diagnosed, but have suspected ME/CFS for quite awhile. Now that I have a pathway I am looking for all the insight, words of wisdom and experiences of others I can get. Thank you @sarah darwins and @geraldt52 for sharing your experiences!

Update: I just ordered a bottle of electrolyte concentrate, no sweeteners, additives, etc. Will definitely give it a try plus my doctor is monitoring my electrolytes right now while being on high doses of antivirals. Thanks again!

 

[jimells]

When I have exceeded my "energy envelope" I can expect insomnia that night and PEM, awful migraine, etc. in the following day(s). I have found 25 mg trazodone to be helpful for the insomnia.

The "ME/CFS: A Primer for Clinical Practitioners" document suggests trazodone "May be the least likely to lose effectiveness for sleep". The "Primer", based on the 2003 "Canadian Clinical Case" definition, can be found here.

 

[sarah darwins]

Update: I just ordered a bottle of electrolyte concentrate, no sweeteners, additives, etc. Will definitely give it a try plus my doctor is monitoring my electrolytes right now while being on high doses of antivirals. Thanks again!

You're welcome, Andielyn. Hope it works for you. Years back I used Gatorade for a while before realising that the artificial sweetener in it (forget which one) was making my migraine problems worse. All the ready-made electrolyte drinks have either artificial sweeteners or loads of sugar. The concentrate was a real find for me. Good luck.

 

[SOC]

The concentrate was a real find for me.

Can you share what product you use? My preferred electrolyte mix has been mostly out of stock for 6 months or more. I don't do well with highly sweetened drinks and definitely not with artificial sweeteners. Most sports drinks focus on sodium because athletes sweat it out (and it's cheap), but we need a more balanced electrolyte mix with more potassium and magnesium, imo. It's not easy to find a well-balanced mix or concentrate that isn't sweetened AND doesn't have folic acid in it.

 

[ahmo]

The most predictable symptom for me in a crash is tired-but-wired and difficulty sleeping. Someone wrote very recently about bicarb + potassium for recovery. These are the most basic elements of electrolyte combos, you might try a small amount, eg., 1/8 tsp each in water)

 

[Andielyn]

When I have exceeded my "energy envelope" I can expect insomnia that night and PEM, awful migraine, etc. in the following day(s). I have found 25 mg trazodone to be helpful for the insomnia.

The "ME/CFS: A Primer for Clinical Practitioners" document suggests trazodone "May be the least likely to lose effectiveness for sleep". The "Primer", based on the 2003 "Canadian Clinical Case" definition, can be found here.

You just nailed my latest crash, migraine and all. I am currently taking a sleep aid and very sensitive to new meds but I will mention that one to my doctor at my next visit. Thank you!

 

[Andielyn]

The most predictable symptom for me in a crash is tired-but-wired and difficulty sleeping. Someone wrote very recently about bicarb + potassium for recovery. These are the most basic elements of electrolyte combos, you might try a small amount, eg., 1/8 tsp each in water)

I am learning so much! All sounds so familiar...thank you for your input, @ahmo

 

[sarah darwins]

Can you share what product you use? My preferred electrolyte mix has been mostly out of stock for 6 months or more. I don't do well with highly sweetened drinks and definitely not with artificial sweeteners. Most sports drinks focus on sodium because athletes sweat it out (and it's cheap), but we need a more balanced electrolyte mix with more potassium and magnesium, imo. It's not easy to find a well-balanced mix or concentrate that isn't sweetened AND doesn't have folic acid in it.

Sure. Currently this one - http://www.amazon.co.uk/Trace-Miner...46838480&sr=8-1&keywords=trace+minerals+volts (there's a pic of the label on there — a pretty simple mix). I've also used "Concentrace", which I think is by the same company, Trace Minerals.

Both seem to work well for me. They last a long time, too, so very affordable. I tend to use them when I feel any warning signs, rather than every day. For some reason that seems to work better for me.

 

[Andielyn]

Can you share what product you use? My preferred electrolyte mix has been mostly out of stock for 6 months or more. I don't do well with highly sweetened drinks and definitely not with artificial sweeteners. Most sports drinks focus on sodium because athletes sweat it out (and it's cheap), but we need a more balanced electrolyte mix with more potassium and magnesium, imo. It's not easy to find a well-balanced mix or concentrate that isn't sweetened AND doesn't have folic acid in it.

I perhaps should have waited for this answer before ordering but I bought LyteShow based on it's reviews and list of ingredients. I don't drink sweetened drinks at all either, @SOC , especially artificial sweeteners (even those considered "natural".) It does not say it has folic acid in it, and it has potassium and magnesium.

 

[Andielyn]

Sure. Currently this one - http://www.amazon.co.uk/Trace-Minerals-Research-Electrolyte-Concentrate/dp/B000Z98KF8/ref=sr_1_1?ie=UTF8&qid=1446838480&sr=8-1&keywords=trace minerals volts (there's a pic of the label on there — a pretty simple mix). I've also used "Concentrace", which I think is by the same company, Trace Minerals.

Both seem to work well for me. They last a long time, too, so very affordable. I tend to use them when I feel any warning signs, rather than every day. For some reason that seems to work better for me.

Wasn't sure if links to vendors/products were allowed so I didn't include, but here's the link to LyteShow on Amazon. I'd be interested in hearing what you more experienced folks think of this based on its label. Obviously I haven't tried it yet.

 

[SOC]

Sure. Currently this one - http://www.amazon.co.uk/Trace-Minerals-Research-Electrolyte-Concentrate/dp/B000Z98KF8/ref=sr_1_1?ie=UTF8&qid=1446838480&sr=8-1&keywords=trace minerals volts (there's a pic of the label on there — a pretty simple mix). I've also used "Concentrace", which I think is by the same company, Trace Minerals.

Both seem to work well for me. They last a long time, too, so very affordable. I tend to use them when I feel any warning signs, rather than every day. For some reason that seems to work better for me.

Looks pretty good, although I'd have to add more potassium since I take Florinef which depletes potassium. I wonder about the sulphates in the Trace Minerals 40,000 volts. I'm sensitive to sulphates so I question whether it's wise to take this amount of extra sulphates daily, of if it's not a particularly significant amount. Anybody have any ideas about that?

 

[SOC]

Wasn't sure if links to vendors/products were allowed so I didn't include, but here's the link to LyteShow on Amazon. I'd be interested in hearing what you more experienced folks think of this based on its label. Obviously I haven't tried it yet.

I need more magnesium and potassium than this product has. I think that's pretty common for PWME. Of course, one can always supplement with more, but I get to the point of wondering why take the electrolyte mix at all if you have to add in more? Why not just take the minerals separately in the necessary amounts?

 

[sarah darwins]

Looks pretty good, although I'd have to add more potassium since I take Florinef which depletes potassium. I wonder about the sulphates in the Trace Minerals 40,000 volts. I'm sensitive to sulphates so I question whether it's wise to take this amount of extra sulphates daily, of if it's not a particularly significant amount. Anybody have any ideas about that?

No obvious problems for me, but, as I said, I don't take it daily. I do occasionally take extra potassium, in pill form, if I get any leg cramps. I'm not very scientific about this stuff. I've just learnt over the years when it "feels like" I might need general electrolytes / potassium or whatever. I do know it matters a lot, and many of us seem to benefit from supplementing around these things, but it's mighty complicated. And of course, what you need changes day by day.

@Andielyn — the LyteShow looks pretty similar. I don't think there's a right answer to this. You'll have to do a bit of trial and error and just go with what works.

 

[minkeygirl]

I've used Elete.

 

[Andielyn]

I need more magnesium and potassium than this product has. I think that's pretty common for PWME. Of course, one can always supplement with more, but I get to the point of wondering why take the electrolyte mix at all if you have to add in more? Why not just take the minerals separately in the necessary amounts?

I'm currently taking a magnesium supplement. Curious, what is your source of potassium in supplement form? It beckons me back to the day my daughter had to be supplemented with K-Phos (potassium phosphate) and it was NASTY tasting, I am thinking it wasn't available in any form but a powder to be mixed with liquid.

 

[SOC]

The "ME/CFS: A Primer for Clinical Practitioners" document suggests trazodone "May be the least likely to lose effectiveness for sleep".

I have taken Trazodone for sleep for years and it works wonders for me. Prior to Trazodone, I rarely slept more than 2 hours straight. Now I get a good night's sleep every single night, PEM episode or not. That doesn't mean the sleep relieves my PEM, of course, but I sleep through the night and don't feel worse in the morning than I did when I went to bed.

I'm currently taking a magnesium supplement. Curious, what is your source of potassium in supplement form? It beckons me back to the day my daughter had to be supplemented with K-Phos (potassium phosphate) and it was NASTY tasting, I am thinking it wasn't available in any form but a powder to be mixed with liquid.

At one point my daughter was given a prescription potassium supplement, K-Dur. It was a monster nasty chalky pill. We used ElectroMix for a number of years, but it's hard to get now. It has a flavor that bothers some people. Currently we are mixing this potassium gluconate powder in our water. I don't notice any taste or texture difference in my water with this.