Resignation

[slysaint]

@digital dog and others. thanks, but I know I'm no different from anyone else. At least you all 'get it'.

 

[sorin]

In general, this means no probiotics or fermented foods (kefir, yogurt, saurkraut etc), no cheese, spinach, tomatoes, avocados, pumpkin, soy or soy beans, red beans. If you eat animal protein it has to be super fresh, no left overs (I can't eat animal protein except very fresh fish). It may take 3 weeks for you to notice a difference, but you might know in less than one week.

I used to the fact that what doctors say today that is harmful and to be avoided, they say tomorrow that the same things are miraculous for your health.

 

[EtherSpin]

damn digitaldog , very full on.
I relate somewhat. 2 kids, 3rd on way (sounds crazy but there is a very good reason I wont go into) sleep is very inconsistent but I do get a few hours most nights.
the number of times I have fallen asleep with the sun up is less than the number of years I've been alive but its very strange the things that actually will do it. on days when I have been wired and weary but needed to plead my case to centrelink or a specialist for example I might take some nootropic drug and a bunch of coffee - I've discovered that coffee actually sedates me into sleep if I have a large amount when I am messed up. also sulbutiamine does it, people usually use that as a stimulant too (engineered b vitamin altered to cross Blood brain barrier) .

you may have already exhausted this avenue but if you haven't get some L-theanine (preferably the high purity suntheanine resold by many brands like doctors best and country life). I used it in the last stages of denial of CFS when I was still working but down to part time and it obliterated some of my lifelong anxieties and was great when paired with a strong cup of tea or coffee. labs have failed to establish an LD50 for it because its so innocuous and though it eventually stopped helping me much after 3 years there was no kind of bounce back or negative effect.

 

[digital dog]

Thanks EtherSpin. Unfortunately I do not drink caffeine as it ramps up my anxiety and so does L Theanine. Im quite an odd ball.
Suicidal today and have spoken to my mother about plans for my death.
I cannot continue with this level of insomnia.
Putting plans in place incase things do not change.

 

[slysaint]

@digitaldog
Try Redbush tea, bananas, listen to Chris Greens album Crusader.....(sometimes works for me).
I also got on my pushbike and just kept going as long as I could.
Try anything that's worked before.
I know exactly where you're coming from, I was there last year.

 

[Raines]

I'm so sorry digital dog, sending you a hug. I know it's not much, but I'm thinking of you and hope things get better soon.

 

[PatJ]

A couple of blog posts from a woman with ME/CFS might help give you some ideas for meds to try:
My Weapons-grade insomnia - Part 1
and Part 2

Please hold on tightly to thoughts of your family and how much you mean to them. Bear this for them if you can't do it for yourself.

I've been suicidal a few times with this illness, including once with a sharp blade at my throat. I'm glad I didn't go through with it because my condition has improved now, not greatly, but enough. Life is not only bearable but even has moments of enjoyment (thanks in part to LDN). This enjoyment would never have happened if I had given in, given up, and let go.

You can make it through this to see better days in the future.

 

[Deltrus]

I haven't given up!

While CFS doesn't recieve much research/funding, related things do!

Ie. Viruses might be eradicated (DRACO or something new). This would be an insane boost to so many diseases.

There is ton of research going into autism, alzheimer's, gut microbiome, sleep, etc. People are trying all sorts of novel drugs and it is only a matter of time before one of these drugs stumbles upon one of the pathways of CFS.

 

[MeSci]

Thanks EtherSpin. Unfortunately I do not drink caffeine as it ramps up my anxiety and so does L Theanine. Im quite an odd ball.
Suicidal today and have spoken to my mother about plans for my death.
I cannot continue with this level of insomnia.
Putting plans in place incase things do not change.

Sometimes having plans can be a comfort, and help you not to actually do it.

I am wishing you all the strength you need, and the solution to your insomnia. I have suffered from chronic insomnia myself. In my case I think it was due to my ACE inhibitor draining me of sodium, and/or perhaps an inappropriate diet. I came through it, and sleep much better now.

I believe you can get there too.

 

[digital dog]

All the female side of my family are insomniacs. No one is as bad as me but at least they understand. If I could get rid of one symptom it would be the sleeplessness. I don't think it will ever go but it has to become bearable; the level of sleep deprivation I have now is NOT liveable.

I spoke to my mum about suicide and she agreed that it may be something I will have to consider. The conversation has made me feel a great deal better. We spoke in depth about it all and she understands that my suffering is too severe to go on indefinitely. My poor mum. So, MiSci you are correct in saying that plans can be comforting.

I think perhaps it could be due to potassium and sodium but I don't even know who to see about this and it is just a hunch I have with NO evidence.

Thank you for the replies. I will read the blogs you sent Patj (thank you).

I had NO sleep last night, after a day of hellish symptoms and I am dreading tonight. If I had had a gun or drugs last night I would have ended it all. Truly. Twenty years of insomnia is too much for anyone.

It is a complete miracle that I am not mentally deranged.

 

[TigerLilea]

Let me phrase this post another way:

If someone told you that you cannot improve through any intervention how would that sit with you?

How do you think you would cope with this realisation?

Would any of you believe that your life was too painful to continue?

Would you still cling onto time being the greatest healer of all?

I've already accepted that chances are I won't get any better. Not unless medical science can come up with some answers. I live my life day-to-day. On the days that I have some energy I use it, and the days that I don't then I don't do much. And life is definitely NOT too painful to continue. As bad as CFS/ME is, we could definitely have it much worse. I'm grateful to be alive and make the most of each day. My best advice is to stop researching CFS/ME every day; don't visit the forums every day; and remember that CFS/ME is only one part of your life - it is NOT who you are.

 

[digital dog]

PatJ, the article/blog is excellent.
I will try and get some Soma. Anyone in the Uk know where I can get hold of this drug? I've never even heard of this for sleep. If this helps me sleep Patj you will be my hero.

 

[Deltrus]

@digitaldog try magnesium, potassium, calm aid lavender(I hear this is more potent than it sounds).

 

[PatJ]

According to Wikipedia, Soma's generic name is Carisoprodol and "...in the United Kingdom and other countries under the brand names Sanoma and Carisoma."

I know you're in a dire situation, but please take note of the possible withdrawal effects from long term use as listed on the Wikipedia page, they're potentially very nasty. Maybe it could get you through this difficult period while you search for safer alternatives.

 

[Timaca]

I would suggest (again) that you look at the histamine content of your supplements and diet. Anti-histamines makes a person drowsy. Histamines make a person awake / agitated. I don't break down histamines well at all (apparently). Before I figured that out, my sleep was fractured, I was agitated in bed, I had restless legs (restless body actually). And so did a friend of mine. We are both SO much better following a low histamine diet.

At least consider it. It may make a huge difference for you. For info on histamines see my blog:

Here's the new SIGHI list.

Wishing you improvement....and soon.

Best,

 

[Mel9]

Thanks EtherSpin. Unfortunately I do not drink caffeine as it ramps up my anxiety and so does L Theanine. Im quite an odd ball.
Suicidal today and have spoken to my mother about plans for my death.
I cannot continue with this level of insomnia.
Putting plans in place incase things do not change.

I find 2 paracetamol tablets help

 

[MeSci]

I think perhaps it could be due to potassium and sodium but I don't even know who to see about this and it is just a hunch I have with NO evidence.

Most doctors routinely do electrolyte tests which should include sodium, potassium, magnesium, etc. Can you ask your doc if yours have been normal, and maybe have a new one if you haven't had one recently?

I admire you enormously if you have coped with such severe insomnia for so long. It is one of the hardest things to endure.

 

[digital dog]

I'm not coping MeSci. I am suicidal. I want to die to escape the insomnia. Thank you for your kind words though.
Everyone has given such good suggestions. Thank you for all of these.
I will look into histamine. I know this sounds defeatist but I have done so many diets that I am so tried of trying them and feel i could go mad if I have to try another...but I will research this.
How quickly did the diet start to help with sleep?

 

[halcyon]

Have you looked into something like Xyrem @digital dog? I'm not sure if it's available where you are or can be prescribed for insomnia, as it's usually used for narcolepsy.

Do you think you have true insomnia or just delayed sleep phase? The latter is characteristic of ME, John Richardson called it the owl syndrome and noted that many with this would go to bed at 6AM. If left to sleep on your own terms, do you think you would still be unable to sleep or is it just that by the time you could sleep you are obligated to be awake?

I thought that I had insomnia at first as well as my bedtime was slipping later and later, but then I learned about the owl syndrome and realized that my sleep phase was just advancing. I can fall asleep with relative ease and stay asleep for 6-8 hours, I just can't do so until 5-6AM.

 

[digital dog]

thank you for the reply Halcyon.
My sleep is so bad that I couldnt care less WHEN i sleep. If i could sleep all day and be awake all night that would be okay. I can't sleep at any time...day or night.
I have true insomnia. Have had it for decades but it is getting worse.
I am scared as it will end in me taking my life unless I find a drug I can tolerate.
I can NEVER tolerate anything though