Resignation

[MeSci]

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?

I know you're not coping at the moment, but you have done at least some of the time, haven't you? Sleep deprivation is used as torture, so it's clearly known to have the power to break people's spirits. The fact that you have survived for so long is testament to a strong spirit.

I don't think you were asking me, but in case it helps, giving up gluten and reducing sugar and grains improved my sleep in a few weeks or months, I think, along with making me calmer. I had been anxious and quite insomniac since childhood, although not as bad as you have been. Despite consuming a lot of fat (mostly coconut oil) my weight also normalised (lost excess fat), although improved sleep can itself do this to some extent.

I see from other threads that you have also benefited from giving up gluten. I think that for me it didn't work the first time, but when I also reduced sugar and grains it did. I started a few supplements too (see info section of my profile if interested), which may have contributed.

Everyone is different, as you know. I know how frustrating it can be to try things that others have raved about and find that they don't help, or even that they have adverse effects, which you sure don't need.

 

[daisybell]

@digital dog i don't have any suggestions but just wanted to let you know I am thinking of you, and hoping that you can find some improvement in your ability to sleep....

 

[slysaint]

@digital dog
If your looking for short term help; last year I was prescribed zopiclone. It only gave me 3 hours and didn't work without combining with the things I mentioned before. I also tried adding melatonin to the mix but had to completely change my day and nightly routine towards getting to sleep at night. No TV, computer use etc.
I split the dose as the main problem has always been initially falling asleep. Then when I woke up a couple of hours or so later I took the other half. As they wouldn't give me any more zopiclone I split the dose still further.
I was going through corticosteroid withdrawal so my cortisol levels were completely messed up.
Now I'm just back to the ME not sleeping well. The better I feel physically, the worse I sleep. Don't know if this might also be a cortisol/adrenalin thing. But I'll take it over the acute insomnia / anxiety.
I bought the Paul McKenna book/CD 'I can make you sleep'.......it didn't.
I 'made preparations' last year, gave things away, got my affairs in order.
What I'm trying to say(very badly ) is there must be something that can help you sleep, maybe then youll see things differently.
Please keep trying.

 

[ScottTriGuy]

@digital dog i don't have any suggestions but just wanted to let you know I am thinking of you, and hoping that you can find some improvement in your ability to sleep....

x2

 

[digital dog]

Thank you to all of you. I appreciate all of your posts.

I am going to try doxepin and seroquil (not together) in tiny doses. I imagine they will make me sleep but Im fairly sure that I will feel dead to the world (more dead) the next day. As long as I don't get akathisia or anxiety I will give them a go..

I am also going to try and get soma for when things get REALLY bad. Desperate times call for desperate measures.

I had promised myself that I wouldnt try anything but I really cannot carry on.

If I can just prolong my life for a few more years then so be it.

 

[Timaca]

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?

I *think* you will notice a difference in just a few days, but it may take a week or so. To really know if an elimination diet is helping it can take 4 weeks. For me, it was 3 weeks into an elimination diet when I felt markedly better. Then when I realized histamine might be an issue, and I cut out high histamine foods, it was less than a week for me to notice a difference.

Cut out all probiotics and fermented foods. If you have questions about the diet, read my blog or ask me.

Give it a go....wishing you a better night's sleep.

 

[Stretched]

@d-dog,
I wish you had in hand a very well reasoned article I read a few years back when I was in a major funk about not sleeping - even when having access to to the right rxs. It was written by a regular guy who had come to terms with resting versus sleeping - and ended up sleeping!

His well reasoned narrative (I think from a sleep forum?) has helped me get off addictive sleep rxs on several occasions, the first time of which I didn't think it could be done. (For me, it's easy to grab a pill I think satisfies, which it does, but only for awhile, then it's hell and 'make up' time, all over again.)

The gist of the true account calls up little bites of 'make sense' , eg that the brain has an autonomic survival mechanism built in such that it will capture enough restorative rest to enable it to carry on, even if not at levels you consciously desire. When sleep deprived it grabs micro seconds of 'survival sleep', if you will. When the stressors begin to ease it takes in more and bigger chunks of restoration, eventually sleeping - if only in small portions at first; then in greater amounts.

Where you are is not working for you. You might want to give this a go, i.e. the exact opposite of longing for a knock out pill - try not to go to sleep... !

At otherwise bed time put on some classical music and begin a journal of how you're feeling each hour.

IOW, don't worry about not sleeping; and wishing for Z- pills. This only adds fuel to your already raging fire of uncertainty. Your certainty now becomes doable...for awhile, as you'll likely see.

Get comfortable, relax and go with the flow of the music and your journal - intending not to sleep... .

I bet you can't go 3 days, total without going to sleep!

For now, set aside the distractions and alternatives. Please report back.

 

[Jamo77]

I was going to suggest something similar to Stretched and complements that approach. I had insomnia for years. I know the place you are in DD it is excruciating. I use to smack my head against the wall sometimes in the pure frustration I simply wanted to die.

I use to get stressed at the thought of going to bed. When I was in bed I stressed. I stressed I wasnt going to get a good sleep and perform academically and ultimately go anywhere in life. I told myself to relax which only made me more stressed. I tried to block out negative thoughts that I wasnt going to sleep that also made it harder to sleep. I tried to just give up mentally. In the end what made a massive difference was giving up the conscious mind and accepting there was nothing I could do at all. For example if thoughts came that I wasnt going to sleep I would accept them. If my mind would start to intervene in a myriad of ways I accepted that too. I accepted the whole lot. No more active forcing but a passive mindset. It takes good time for this to work and to cast the conscious mind aside.

Similarly my cuz is an insomniac and lives a full life. When young she told her dad she can't sleep so he told her just to read books and not to worry about sleep! That she still does during the night so while she is not sleeping she is relaxing. Then I think she might turn off the lights for a bit just relax a bit but not sleep then read the book again.

Also for me what helps with relaxation and sleep is sinus irrigations.
HIP has a thread about approaches to controlling anxiety by treating sinus inflammation which is prevalent in cfs people.

http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

Sleeping in my own bed by myself helps I could never sleep well next to others.

Sometimes changing bed location also helps some believe there are lay lines every couple of metres and if one is on this then they wont sleep. I don't know if they exist or not but all I know is some locations give me the feeling of electricity running through my body and when I move to a different spot I get more relaxed.

Apologies a few ideas there but I was in sleep hell and those things genuinely help me.

Now if only I could have your tears - I suffer from Flat Affect and can't cry and would love to shed a tear!

Will be thinking of you and your family.

 

[EtherSpin]

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 want to write to you but I don't want to be the typical type who throw any medication they've heard of at us - please forgive me if thats what I'm doing, when I tried admitting self to hospital ward and got call from CFS doc giving me emergency appointment they knew the antideps they were starting me on would take weeks potentially and that i wouldnt go that long so they gave me seroquel and I have a slide of that still in my medicine tin, when I really need to sleep I slice a fraction of 1 tablet (1 tab is already low dose!) and it knocks me the hell out.

I do understand that you *should* be deranged by now, another factor in leaving the UK was being locked in a house by someone i got restraining order against,got locked up in room and forcibly kept awake for days - sleep deprivation WILL drive people mad but on the flip side the relief that comes if something successfully sedates you can make you feel as you slip into the sleep that if that hurdle has been surpassed maybe there is more that can be done for your other problems.

I'm thinking of you - try everything you can, the stakes are high, I know you have low drug tolerance but there should be some unique agent out there that will work on a pathway not detrimental to you.
BTW seroquel is a histamine receptor blocker (noticed the mention of histamine up above) the low doses will do that and ten or so times the dose I was prescribed is when it actually starts acting as a potent anti psychotic.

 

[MeSci]

Cut out all probiotics and fermented foods.

OTOH, some people find that certain fermented foods fix their gut microbiome and facilitate sleep. It's different for everyone.

 

[Timaca]

Probiotics are problematic for those with histamine intolerance. That is why they need to be cut out initially. They often cause sleep disturbances for those with histamine intolerance. So do other fermented foods and foods high in histamine...... Once you know if histamine intolerance is a problem and you know how you feel off all high histamine foods (including probiotics) you can begin to add foods in and see what your response is......

 

[Gingergrrl]

There is a big difference between someone having MCAS and having no choice but to eliminate histamine foods to avoid anaphylaxis and someone not having it but still benefitting greatly by using antihistamines or eliminating certain foods for their sedating/sleep properties.

Don't want to go further off topic but think this is an important distinction. Am also thinking about you @digital dog, and apologize if these are duplications, but have you tried Benadryl (just plain dye-fee version- not the ones with Tylenol in them), Remeron or Atarax for sleep?

 

[digital dog]

I have tried almost everything...sometimes only once as I was too ill ( I can handle all the physical side effects but when it affects me mentally I do not stick things out.)

I have got a prescription for doxepan. It is for 25 mg but I will pour the capsule out and take 1-3mg to start. the pharmacy didn't have it today so I have taken a Nytol (antihistamine). Last time I had one I threw the packet out due to irritability and anxiety. I took one a few hours ago (I needed to escape my reality) and I feel light headed and nauseous. When I stand I nearly pass out (bloody wish I could!)

I will let you know how the doxepin works out. I doubt it will be anything but a astronomical disaster but when you are so close to suicide what the hell does it matter?

Wish me luck X

 

[MeSci]

I have tried almost everything...sometimes only once as I was too ill ( I can handle all the physical side effects but when it affects me mentally I do not stick things out.)

I have got a prescription for doxepan. It is for 25 mg but I will pour the capsule out and take 1-3mg to start. the pharmacy didn't have it today so I have taken a Nytol (antihistamine). Last time I had one I threw the packet out due to irritability and anxiety. I took one a few hours ago (I needed to escape my reality) and I feel light headed and nauseous. When I stand I nearly pass out (bloody wish I could!)

I will let you know how the doxepin works out. I doubt it will be anything but a astronomical disaster but when you are so close to suicide what the hell does it matter?

Wish me luck X

I wish you all the luck you need, @digital dog. You don't deserve this torture. Hoping for good news.

 

[digital dog]

Esther,
I asked my doctor to prescribe me seroquel but she wouldn't. Apparently only psychiatrists can prescribe it.
She has requested I see one and I don't really care anymore.

 

[digital dog]

Thank you MeSCi,
You are always so kind on this forum.
For the first time I am actually scared of what the outcome will be.
I don't care anymore if I live or die.
I've battled things for too long now.

 

[Ian]

If i had given up, I would have never have found out what was wrong with me, and I wouldn't be better today.

 

[Mel9]

Thank you MeSCi,
You are always so kind on this forum.
For the first time I am actually scared of what the outcome will be.
I don't care anymore if I live or die.
I've battled things for too long now.

I'm so sorry you are feeling so awful

Christmas is a stressful time
I hope things look a tiny bit better soon!
Hang in there

 

[digital dog]

Took Nytol at 5pm last night (doxepin has to be ordered into the pharmacy) and Im a screaming mess today. CAn't function at all which is impossible as I have a child excited for christmas and there I am shuffling and slurring and crying in the bathroom trying to hide this f****** mess of my life.

Doxepin will catapult me into the stratosphere of hell if Nytol does this to me.

There is nothing I can take and there is nothing I can do unless I can live at this level of suffering (which I can't) ...it has only taken me 18 years of constant fighting to realise this.

 

[MeSci]

Took Nytol at 5pm last night (doxepin has to be ordered into the pharmacy) and Im a screaming mess today. CAn't function at all which is impossible as I have a child excited for christmas and there I am shuffling and slurring and crying in the bathroom trying to hide this f****** mess of my life.

Doxepin will catapult me into the stratosphere of hell if Nytol does this to me.

There is nothing I can take and there is nothing I can do unless I can live at this level of suffering (which I can't) ...it has only taken me 18 years of constant fighting to realise this.

I'm so sorry to hear this. Was it 25 mg or 50 mg Nytol?

Doxepin might not necessarily affect you the same way, being a different type of drug.