How do we treat severe insomnia for cfs/me

[Calathea]

Thanks for the info. I wonder what such people would say about other drugs with lesser-known withdrawal problems? I am still having a grotty time coming off gabapentin, and while I was warned that it's known for annoying side effects while you're on it, no one breathed a word about how hellish it can be to come off. My GP (who is usually excellent) eventually mentioned vaguely that she'd had a few other patients who'd had a bad time with withdrawal, and then hastily took back the word "withdrawal".

 

[runner64]

I ended up with severe circadian rhythm problems. First I got Delayed Sleep Phase Syndrome (DSPS), then that turned into Non-24 Sleep-Wake Cycle (N24). Plus frequent awakenings, poor sleep quality, lack of deep sleep, the usual.

Ambien is the one that really frightens me. It caused me to hallucinate, and I was absolutely stoned for the next week. I was getting a home help daily at that point, and every day she'd come in and say, "Now that I see you today, I realise how stoned you were yesterday." Then the next day it would be the same, all week, and I was wobbling all over the place, not safe to make so much as a cup of tea (and the ME was less severe back then, bear in mind). It's not even listed as a hallucinogen on UK leaflets, although it's a well-known side effect.

I can use temazepam but only very short-term, for a few nights at a time. Now that I know a lot about what helps my sleep, it's a useful tool to have in my kit, but on its own it doesn't do much for long-term problems.

The main things which have helped are darkness therapy, and to a lesser extent light therapy. I suppose it's "natural", although it's not herbal, it's a way of getting your body to produce its own melatonin. (Melatonin tablets did nothing for me, and I suspect are probably counteracted by blue light exposure in many people.) The effect was immediate and profound. My sleep's still far from perfect, and I still wake up feeling like a dead rat, but the sleep is at least at the right times now and noticeably improved in quality. I started off with bright light therapy, which brought the N24 back to DSPS, and then a few years later discovered darkness therapy, which controls the DSPS and generally improves the quality of my sleep to a certain extent. It's approximately equivalent to a good sleeping tablet for me.

Unfortunately, when I started on gabapentin a few months ago, it seems to have done something odd to my sleep. I slept better than usual when I was on it, more deep sleep would be my guess, but when I started tapering off it my sleep quality deteriorated, and markedly so when I finally stopped it. That was about three or four weeks ago, and my sleep's still not back to usual, to my dismay. Admittedly, I just had a hellish weekend due to three days on metachlopramide, and my body is probably in a state of not knowing what just hit it. I'm using the odd half-tablet of temazepam (overreacting to meds at the moment too!), but I'm being very cautious after the last few weeks of misery.

I've written about the whole light therapy and darkness therapy business here, by the way. I really should do a proper post on it. Darkness therapy is probably not what you think, it involves avoiding blue light specifically (since that is what suppresses melatonin), which translates as wearing orange glasses for three hours before bed and not letting myself see any white light if I get up during the night.

I've just learned about the darkness therapy, I've heard it referrenced but I didn't know the specifics. I'm going to read that link. Computers are definitely a "no" before bed lol. You're not overreacting with those meds. If you take the temazepam just on occasion, it's not consistent enough to change the brain causing the dependence so you avoid potential side effects. And Ambien does that to a lot of people. You're being really smart. As far as the gabapentin, Dr. James Wright has a very educational podcast with his peers in the above group discussing it in regards pain etc. This might be of interest to you.
http://www.ti.ubc.ca/podcast/ti-podcast-letter-75-gabapentin-pain-new-evidence-hidden-data

 

[runner64]

Hi Calathea, gabapentin ( aka nuerontin) is known for having a withdrawal in the benzo community. They nicknamed it new rotten because of it. It's also common as you experienced, not being told. I'm sorry about that. I'm glad you found that info helpful.

As far as you questioning, drugs to sleep with lessor known withdrawal, doctors educated in benzos and z-drugs usually go to, 2nd generation anti histamines like Atarax and Vistaril. They used to be used for people that had anxiety and/or insomnia. Stronger than benadryl and gravol etc. No dependency. They got weeded out once benzos and z-drugs were marketed, and the dependency those caused kept people on resulting in making more money.

 

[penny]

This is clearly very personal and we all seem to be VERY different - both in what we are comfortable with and how these substances effect us.

I tried various 'natural routes' for the first two years of my illness (melatonin, 5htp, magnesium, Valerian, other stuff I can't remember probably), strict sleep hygiene, stimulant avoidance - and my sleep got worse and worse and I got sicker.

Now I'm on a cocktail that's mostly unnatural and seems to be working well for me: baclofen, ambien, a touch of doxylamine succinate (the antihistimine in nyquil - and thanks to Heapsreal for this suggestion!!), LDN, magnesium (most of these btw are very low or pretty low doses)

Considering that I now often feel better when I wake up than when I went to bed (ah, restorative sleep, the holy grail!), do I care that this isn't 'natural'? Not. A. Bit.

Would I take Valium or other z-drugs if I couldn't sleep any other way - quite probably, though I would do my research before deciding.

 

[runner64]

This is clearly very personal and we all seem to be VERY different - both in what we are comfortable with and how these substances effect us.

Considering that I now often feel better when I wake up than when I went to bed (ah, restorative sleep, the holy grail!), do I care that this isn't 'natural'? Not. A. Bit.

Would I take Valium or other z-drugs if I couldn't sleep any other way - quite probably, though I would do my research before deciding.

Listing facts that many aren't aware of isn't personal. I am NOT saying, do not take benzos or z-drugs. Yes, saying these substances affecting us personally is why I made sure to say the side effects depend on genetics as to if it happens. It does 30-50% of the time and one of the only doctors that took time studying it proved it. These are just facts. It's not a debate about sleep and what and what not to take.
http://www.benzo.org.uk/drcha.htm

I've not said anywhere don't take anything "not natural". Like you I take on occasion doxylamine succinate, it's in Unisom ll as well. And I take gravol, benadryl sometimes.

I thought perhaps my listing research that many wouldn't otherwise find on their own, would HELP those wanting to research the pros AND the cons. Then they can make a clear informed decision for themself. If you contact the doctors that I listed who are the select few that studied the drug you will see it's not personal but fact.

I'm baffled how what I post to inform about possible "side effects" caused by genetics is turned into a different meaning. I'll leave it.

 

[penny]

Hi Runner64,
I think I've miscommunicated, I wasn't referring to your providing information about the possible side effects of benzos as personal. I was referring to how differently folks respond to different sleep supplements and medications. Sorry for the confusion!

I totally agree with you that it's important that folks know the pros and con's and then decide for themselves. And I'm not contesting what you say regarding the effects of benzo's, you've done a lot of research, I haven't. And since I don't take them or foresee needing them in the near future, I don't really have a 'dog' in that fight. I am grateful you provided this information, just in case I do ever need it.

But this thread isn't just about benzo's, its about what different people do to improve sleep. And I think sometimes, some people fall into the idea that 'natural' is automatically is better. And when I say some people, I mean that I did this, so perhaps my 'defense of the unnatural' is because I am irritated at myself that it took me so long to try the 'stronger' stuff! Heck, if the natural had worked for me, that would have been awesome, and I would have shared that info too.

Take care,
Penny

 

[heapsreal]

Allopregnanolone (3?-hydroxy-5?-pregnan-20-one or 3?,5?-tetrahydroprogesterone) is a prototypic neurosteroid present in the blood and also the brain. It is a metabolite of progesterone and potent modulator of GABAA receptors. While allopregnanolone, like other GABAA receptor active neurosteroids such as allotetrahydrodeoxycorticosterone (3?,21-dihydroxy-5?-pregnan-20-one; THDOC), positively modulates all GABAA receptor isoforms, those isoforms containing ?-subunits exhibit greater magnitude potentiation. Allopregnanolone has pharmacological properties similar to other positive modulators of GABAA receptors, including anxiolytic and anticonvulsant activity.[1]

The biosynthesis of allopregnanolone starts with the converting of progesterone into 5?-dihydroprogesterone by 5?-reductase type I. After that, 3?-hydroxysteroid oxidoreductase isoenzymes (also referred to as 3?-hydroxysteroid dehydrogenase) converts this intermediate into allopregnanolone. Anxiety and depression are common side effects of 5?-reductase inhibitors such as finasteride and dutasteride, and they are believed to be caused, in part, by the prevention of the endogenous production of allopregnanolone.

The 5?-epimer of this compound (pregnanolone; 3?-hydroxy-5?-pregnan-20-one) has similar properties to allopregnanolone, and the 3?-methyl analogue, ganaxolone, is under development to treat epilepsy and other conditions.

Allopregnanolone aids neurogenesis and has been found to reverse neuron creation and cognitive deficits in mouse model of Alzheimers disease.[2]

http://en.wikipedia.org/wiki/Allopregnanolone
Theres plenty of info with a quick google showing progesterone enhances gaba receptor sensitivity.

 

[heapsreal]

Hi Runner64,
I think I've miscommunicated, I wasn't referring to your providing information about the possible side effects of benzos as personal. I was referring to how differently folks respond to different sleep supplements and medications. Sorry for the confusion!

I totally agree with you that it's important that folks know the pros and con's and then decide for themselves. And I'm not contesting what you say regarding the effects of benzo's, you've done a lot of research, I haven't. And since I don't take them or foresee needing them in the near future, I don't really have a 'dog' in that fight. I am grateful you provided this information, just in case I do ever need it.

But this thread isn't just about benzo's, its about what different people do to improve sleep. And I think sometimes, some people fall into the idea that 'natural' is automatically is better. And when I say some people, I mean that I did this, so perhaps my 'defense of the unnatural' is because I am irritated at myself that it took me so long to try the 'stronger' stuff! Heck, if the natural had worked for me, that would have been awesome, and I would have shared that info too.

Take care,
Penny

Hi Penny, i agree with you. Many of us had bad sleep disorders from me/cfs before using any sleep meds and we have tried different combo's of natural alternatives etc. With so much sleep deprivation we turn to meds and find they helped us alot. I dont know what else someone is suppose to do if sleep meds werent available. Antihistamines dont work for long as tolerence to them is very quick. I think for me/cfs people they are valuable drugs.

cheers!!!

 

[penny]

Many of us had bad sleep disorders from me/cfs before using any sleep meds and we have tried different combo's of natural alternatives etc.

Yep! I was a really good sleeper when I got sick... sigh...

It's a personal cost/benefit analysis too. The worse the problem is, the more it may (and this is a personal choice) be worth a certain degree of risk in treating it. It should be a well informed risk, but... This is reminding me of the differences of opinions people have about the wisdom of taking antiretrovirals or rituxan. They have potentially serious side effects and people should be aware of those side effects, but some people will still decide the potential benefit is worth the risk.

And I do think the seriousness of insomnia, like ME/CFS, is often underestimated. Sleep deprivation can be so damaging to the body and mind. It can actually be fatal and not just in a nodding off at the wheel way: http://en.wikipedia.org/wiki/Fatal_familial_insomnia (thank goodness this is very rare!)

I didn't realize any of this when I first got sick and developed sleep problems. I had the idea that insomnia was unpleasant but one could avoid caffeine or go to bed at a regular time or if necessary push through the effects. Ah my 'youthful' naivete!

 

[Sing]

I've had sleep problems for 35 years (just counted). Suffered without medication or anything for around 15 years, then tried the herbs and natural stuff, with some improvement, then, as my overall condition worsened, got started on "Benedryl", the generic. This worked for some years. First 2 pills, then 1, then 1/2 as I had to lower to it to make the side effect of more brain fog workable. Getting on Trazodone was very helpful. Which I added to the 1/2 Benedryl for some years, then removed the Benedryl (Diphenhydramine HCL), and kept on with the 37 mg Trazodone which was my right dose. This began to bother me more, however, in terms of adding to my low blood pressure problem the past two years. So I got off it.

Ambien I have tried just a little bit a short while but had a strange experience, a blackout and some kind of psychotic event--thinking something had happened that hadn't. I heard from a doctor that this can happen with Ambien, so that was the end of that experiment!

And Amitryptilene--I tried one pill of the lowest dose and had awful brain fog all the following day. End of that.

Having read Cheney's article I persuaded my doctor to let me try a low dose of Clonazepam, half of the .5 mg pill. Along with this I have been using Gabapentin for pain and sleep the past five years or so. But, I discovered that my kidney function is now subnormal, so I reduced the Gabapentin in some weeks to half. Can't seem to go lower. And reduced the Clonazepam to 1/3 of a .5 mg pill. This probably sets the record for a low dose! It is actually the minimum that seems to help somewhat for pain and sleep and also to be non-addictive--in this sense: I don't want to increase the dose. When it was higher, I felt as though "I needed a little more"--a danger sign which frightened me. Keeping it low also helps with brain fog.

More: Dr. Kilmas points out that over-exertion, muscularly, produces inflammatory cytokines. This means pain! I am learning that when I don't overextend physically, and I rest enough, I sleep better and have less pain. (Where was I all these years in terms of learning how to take care of myself?) Oh yes, and estrogen. As I am low in all the hormones, I have been able to take them, but I found that estrogen (estradiol) both as a pill and a cream improves sleep. And I found that progesterone, in the amount the endocrinologist would like me on, makes me feel clinically depressed, so I refuse that.

I could still use a better pill, one that didn't cause brain fog the next day, or addiction, or worse low blood pressure, or kidney damage. But, what would it be?

 

[xchocoholic]

Okay, you take those supplements. Melatonin didn't cut it for me but maybe the 3 together might. Thankyou for your recipe. I appreciate it.

I could get some pretty big hangovers when I took klonopin too. And benadryl. I still take benadryl sometimes though.

I don't take anything you listed above that could negatively influence my sleep. My offender is something out of my control neurowise. I can actually feel it and have a real noisy head (tinnitis, whooshing) together stamping it's strong neuro lol. (Chemicals we can't pronounce. You're funny.)

Melatonin alone does squat for me too. I need all 3 if I want to be sure
that I'll sleep thru the nite. I experimented extensively but everyone is different so you'll need to also. I didn't realize there was a combo of these until I'd already played around with these. Btw. Just in case, always start slowly with new supps.

Just to be clear .. It took a year or more after cleaning up my diet for my brain to remember how to fall asleep on it's own. I remember writing in my journal about this.

I've had numerous healing moments like this over the last 6 1/2 years. My latest is from eliminating caffeine. I'm amazed at how good it feels to really be calm and at peace .. I felt better within a few days but now 8 months later, I'm very much at peace .. : )

Looking back at my behavoir on gluten, caffeine and sugar, I must've been a pain in the arse ... Lol..

Sure some people totally heal from whatever within a few days or weeks of eliminating toxins but if you've been sick for years, it can take longer. Imho, dr wahls documents her journey well.

Tc .. X

 

[heapsreal]

Many of us have been on sleep meds for awhile as well without having to increase doses, can this be killing off our gaba recptors, if this happened then sleep meds wouldnt work at all as they would need a receptor to attach to be able to work. Many off us can develop tolerence to certain meds but this can be overcome by rotating between different meds or taking a holiday from benzo's and using antihistamines for a short while etc.

Yes sing many good cfs docs like u have mentioned, have shown our causes of sleep dysfunction like cytokines and hormonal disturbances are common and many cant get past stage 2 sleep, if they can sleep at all. I have read that benzos stop us from getting stage 4 deep sleep, but i have also read ( iwish i had saved this link but will look for it) that chronic use of sleep meds that stage 4 sleep ius reached and its only the early stages of starting sleep meds that these sleep stages are severly interrupted.

I think u can find any study to back your arguement for and against sleep meds, but it is an individual thing as alot of these studies dont outline the causes of insomnia, most info sites say that insomnia is apart of depression and many doctors are trained to treat long term insomniacs like depression, so the cause of the sleep disturbance isnt really investigated. Its like most medical conditions they dont know much about, they just lump it in with depression, the great escape diagnosis.

cheers!!!

 

[CBS]

Hi Heaps,

Thought that I'd post my 2 cents worth. I think this post is important as sleep is both a strong indicator of how I am doing as well as an essential issue that I need to address on many fronts.

Before ME, I had no sleep issues - EVER. With the acute onset of CFS my sleep initiation and maintenance quickly became a significant issue. I could not get to sleep nor could I stay asleep for more than 2-3 hours at a time without the aid of Benadryl, Tylenol PM, or the occasional Ambien that my former doctor would very reluctantly prescribe (about 10-20 tablets every six months). It was miserable.

After 4 years of moderate to severe ME, I had a period of near complete remission (about 90% of normal - brought on by low dose hydrocortisone therapy) during which I would have a "bad" day every 4-6 weeks. I found it quite interesting that during the 4-6 weeks of being nearly symptom free I had absolutely no sleep issues but on that one rare day it always began the night before with the same old inability to initiate or maintain sleep.

When I relapsed (after 6 years of remission), the sleep issues returned to their earlier constant level of severity. At first I tried to manage with Tylenol PM and Benadryl but both often had the significant side effect of irritability, tremor and INSOMNIA! I also tried Gabapentin but that caused severe postural headaches, dry mouth and dehydration. Finally, my doctor present doc decided that the unresolved and constant sleep issues were causing significant issues of their own and he gave me an Rx for Ambien. I've been on it daily for three years with no issues and my sleep has improved dramatically. In addition, I do use a low dose of klonopin for neural pain on days that I've overexerted (typically .25 mg of klonopin when the neural symptoms become pronounced - often around 6 pm on days I've run errands, etc.).

There are a couple other issues that I have found impact my sleep dramatically. First, being too active in the evening results in my waking at 3-4 am regardless of my having taken Ambien or klonopin. It is like I've received a large dose of cortisol and I find myself completely wake in a matter of just a few minutes (I have documented diurnal rhythm abnormalities in my cortisol production and I take low dose hydrocortisone in the morning - my endocrinologist has diagnosed a disrupted pattern of cortisol secretion due to hypothalamic/pituitary damage so this makes sense). When that happens, nothing helps to get me back to sleep and so I typically just get out of bed until I feel tired again (around 9-noon the next day) and then I go back to sleep for as long as I can. I've now simply made a rule for myself that I will try to avoid any significant cognitive or physical activity (running errands, balancing checking accounts, paying bills, reading, posting on PR!, etc.) after 6 pm. It helps. Taking naps during the day when I feel tired also helps keep me below the threshold of having overexerted.

Second, treating my GI issues (SIBO with Xifaxamin) helped dramatically. I had underestimated how much discomfort the GI issues caused and in turn my sleep was suffering and often fitful. The same dynamic of interrupted sleep was a constant with the frequent need to urinate. Treating my diabetes insipidus with desmopressin allowed me to get through the night with out the need to empty my bladder (it also helped with a number of other issues caused by the accompanying hypovolemia that were leading to reduced sleep quality). Valcyte has also significantly lessened many of the autonomic issues (irregular BP, and arrhythmias) that were degrading my sleep quality.

Third, I have found that temperature plays a significant role in how well I sleep. On days when I have overdone it and I'm having a significant amount of neural pain, a heating pad or warmed blanket feels wonderful (there's a reason that hospitals have blanket warmers on their floors and in the ER). I will often turn on the an electric mattress warmer when I'm not feeling well BUT, if I forget to turn it off before falling asleep, I ALWAYS wake in the middle of the night with significant swelling/redness in my head and neck.

In summary, sleep is a complex and critical issue that can deteriorate into a vicious negative cycle but getting all of the above in order can and has meant that for me (at this time), my sleep patterns have been returned to a pretty healthy and constant pattern and in turn, I feel much better now that I'm regularly getting a good night's sleep.

As for natural remedies like melatonin, I've had no luck with these - it feels more like trying to stop a raging elephant by throwing marshmallows at it.

 

[runner64]

Hey Heapsreal!! I was just explaining side effects that many are unaware of. You're right in that long term they prevent the deep stages.

Just so you know "Progesterone enhances gaba receptor sensitivity has nothing to do with fixing a damaged GABA receptors" It "acts" on GABA receptors. It doesn't fix them. Just like Calathea is having a hard time tapering gabapentin(neurontin), women can have that same struggle tapering progesterone. I don't know what side effects she's having, but below you can see how some women are getting side effects of jacked adrenals shooting cortisol tapering progesterone. Why? Because it "acts" on the GABA receptor. And GABA receptors control the central nervous system and brain's capability to "calm itself." That's huge. So it's left in a constant state of hyper-excitability. And I'm not just talking about withdrawal anxiety which as you can see is then physically based. Many many other symptoms can result from this type of change in function.

This means, it can ultimately affect many parts of the body. Benzos and z-drugs, compromise the GABA receptors to the largest degree.

Read what molecular biologist have to say about the change to the receptors benzos incurr.
http://www.benzo.org.uk/ashsupp11.htm
>>As a result, the brain may be generally less sensitive to GABA and the individual is left with heightened central nervous system excitability and increased sensitivity to stress. Molecular biologists point out that changes in gene expression can be very slow, or even unable, to reverse. (The action of benzodiazepines at GABA receptors is explained more fully in the Manual).<<

It may not just be stress, but pain from other symptoms excacerbated because excitory neurotransmitter are traveling too fast. And, one aspect of what happens to GABA receptors from benzos and z-drugs is called "the kindling effect". Dr. Ashton talks about this and we see it on boards with members. If a person goes on a benzo or z-drug, they may stop with not side effects. Non. BUT, if they go on again, they get symptoms and have a harder time coming down. Genetics deciding severity. Why? Because even though a person feels healed, the drug changed the GABA receptors so the second time, it's a whole different experience.

I'm not trying to be right. I'm just wanted to inform.

Progesterone does nothing for benzodiazipine side effects and it can actually make the withdrawal for benzodiazipines worse as it affects and targets the adrenals like one aspect of benzos while on, therefore coming off. Many women trying to quit progestone end up with adrenals wide open as a physical side effect, not emotional based. Just like one aspect of benzos is targeting adrenals to overwork to overcompensate for the sedation putting people in fight or flight with no control as cortisol shoots out constantly. These are not the painful side effects but 1% of the side effects as benzo symptoms are burning, head pressure, this kind of thing, parkinson shakey and these can be chronic and go on for months so that's why you slow taper off if dependent. Progesterone will not fix injured GABA receptors. Again, verify this with the doctors I posted who studied the drug.

Here is what happens to some women tapering benzos while on and trying to get off progesterone. Many women end up being prescribed benzos to combat progesterone withdrawal anxiety from jacked adrenals progesterone caused. Nasty cycle. Doctors of course say it doesn't happen. Just like some say CFS isn't real. Just like you can't get CFS from implants like myself and hundreds of thousands of other women.
http://www.benzobuddies.org/forum/index.php?topic=47259.0

Here's an excerpt from another one reply #13.
http://www.benzobuddies.org/forum/index.php?topic=36868.10
Progesterone cream is the reason she was put on benzos in the first place. She used it for 2 weeks to relieve menopause sxs and then caught a cold and stopped c/t, not realizing that could harm her. Well it sent her into rolling panic attacks for days. She rushed to the dr and was put on Xanax and the rest is history.

Flip through some of the withdrawal threads to see what type people get and duration. Some are weaker, some are severe for months like burning, with eye pressure and head and more.
http://www.benzobuddies.org/forum/index.php?board=55.0

Look at this insomnia thread coming off. Due to the genetics and change to the GABA receptors, some sleep as they heal faster, some take months or years for them to heal.
http://www.benzobuddies.org/forum/index.php?topic=29380.0

Here is a support forum for withdrawal anxiety from progesterone. It's a physical based side effect, not emotional. On benzos from progeterone or on progesterone from benzos. Cylic.
http://www.power-surge.com/php/forums/index.php?showtopic=27746

*So you can see, this drug, doesn't help benzowithdrawal.

Here's people having a hard time tapering off of Gabapentin. Just like Calathea said she's having. But progesterone and gabapentin do not have the syndrome benzos do in other physical side effects and the length that benzos and z-drugs can have. There's ton's of these threads. People helping people.
http://www.benzobuddies.org/forum/index.php?topic=44641.0

Patient forums and find out what real people are saying about a drug's affect. At least people here can go there to ask if they want to inquire.

I'm not discouraging these meds. I'm just informing about them. I'm not saying doctors are bad. I have a great open minded progressive intelligent doctor. Who is very aware. And learning from me, how to get 2 patients off of klonopin that are stuck on from the side effects. I'm just saying, how these drugs work in the brain, they're not required to learn. Or they learn one side. The pro. People can feel great on them until they reach tolerance or start to taper.

I'm glad it's helped some people. As well, I have been GREATLY helped HERE from those here with more knowledge on CFS than I have.

There is a very big knowledge gap between drug research doctors with no conflict of interest that study drug behaviors and actions for a living, and the mainstream medical community. And even if someone is a specialist, it doesn't mean they know anything about the drug they are giving you. It's unfortunate, but it's a fact.

You'll learn the most about meds on patient forums where we guineau pigs go. Not from pharma sites or doctor sites. We're the clinical trials. Some doctors will (quietly) admit that to you lol. xo

*Thanks Penny. I misunderstood you! xo

 

[heapsreal]

Thanks for the reply CBS, looks like we have similar sleep issues. It would be good if most doctors understood this.

cheers!!!

 

[heapsreal]

Hi Runner64, i know where your coming from and appreciate the info but i think our sleep issues are different to those who dont have cfs/me. for some of us we are dammed if we do and dammed if we dont. But i think its also important that people consider that benzo meds maybe worsening their sleep and if their sleep improves with slowly tapering off then they have won the battle of getting sleep. Many of us have had the bad sleep problems before using benzo's and have felt better treat our insomnia like this, so for us coming from that direction its very hard for us to understand that sleep meds are worsening our condition or think that benzo's are a problem for us as the condition was present well before using benzo's. Like what has been mentioned already, there are many causes of sleep dysfunction and chronic use of benzo's could be one of many things doing this but also benzo's have helped many with sleep problems. The doctors you have mentioned that treat benzo addiction to improve sleep, have they done any work with cfs/me patients? Personally i dont think many cfs/me people would improve coming off benzo's until the underlying cause like an infection or immune defiency or autoimmune problem is treated, but thats just my opinion.

cheers!!!

 

[Crappy]

Hi Heaps, as you know, I appreciate discussions of sleep related issues.

I sometimes went hungry as a child and I thought that was the worst thing a person could endure. I guess a higher power wanted me to know there are worse things, and Viola! Intractable Insomnia.
I guess we now have some concept of what African Trypanosomiasis, or Sleeping Sickness victims feel before they die.

QUOTE=CBS;239716] I will often turn on the an electric mattress warmer when I'm not feeling well [/QUOTE]
CBS, I expiermented with a different kind of electrical assistance; Zappers. The little gadgets that are suppose to rid the body of diabolical microorganisms through electrical impulses. I had poor results.

Once a neurologist at his wits end with my insomnia finally suggested trying Electro Convulsive Therapy, otherwise known as "Electroshock". I didn't do it, but I often wonder if it would have reset me neurologically and maybe wiped out the critters responsible for my health issues. If the "Zapper Theories are right.

Finally, I haven't done it yet, but I keep consider buying a Tazer and shooting myself, it wouldn't be like Electro Convulsive Therapy. But it might fry the little critters inside us that precipitated our symptoms.

What do you guys think, maybe all of us on PR should buy Tazers and Flash Mob somewhere and just shoot each other! Who knows, it could be the cure.

I can see it now, all of us flopping on the ground like having seizures. Then we would get up and walk away cured

Actually, if we were cured, I think it would cause an Earth Shattering Celebration! :Retro smile:

 

[runner64]

Hi Runner64, i know where your coming from and appreciate the info but i think our sleep issues are different to those who dont have cfs/me. for some of us we are dammed if we do and dammed if we dont. But i think its also important that people consider that benzo meds maybe worsening their sleep and if their sleep improves with slowly tapering off then they have won the battle of getting sleep. Many of us have had the bad sleep problems before using benzo's and have felt better treat our insomnia like this, so for us coming from that direction its very hard for us to understand that sleep meds are worsening our condition or think that benzo's are a problem for us as the condition was present well before using benzo's. Like what has been mentioned already, there are many causes of sleep dysfunction and chronic use of benzo's could be one of many things doing this but also benzo's have helped many with sleep problems. The doctors you have mentioned that treat benzo addiction to improve sleep, have they done any work with cfs/me patients? Personally i dont think many cfs/me people would improve coming off benzo's until the underlying cause like an infection or immune defiency or autoimmune problem is treated, but thats just my opinion.

cheers!!!

Hey heapsreal!! (((((HI)))))))). That's a cyber hug. I truly adore Aussies. I thought you were an Aussie lol. You're not getting it lol. That's okay. I don't believe people can improve without sleep either. I could not agree more with you. I really couldn't. And THANKYOU FOR LETTING ME SHARE TODAY. ESPECIALLY ON YOUR THREAD. I'm sharing, these particular sleep med has a whole other set of problems associated with it that most docs therefore patients are unaware of. It's about how these specific sleep meds, benzos and z-drugs, affect people neurologically.

I'm not talking about possible sleep dysfunction from chronic benzo use. I'm talking about extreme neurological brain changes that go much further than that, which these 2 types of drugs can cause if taken daily depending on genetics.

The doctors I gave you the name of are not "benzo addiction doctors." They are not "addiction doctors" period. This has nothing to do with addiction. And, they are not treating ANYTHING to improve sleep. They studied the drug, it's action, a couple of them helped people come off. 2 of them have been doing it for over 30 years. They are the select few, that know the truth of these drugs.

They are doctors that study how drugs work and how they affect the central nervous system and brain. A couple of them specifically study just this, as well as dangerous side effects and publish what the general public isn't told by the mainstream medical community. All of these doctors I posted are therefore well aware of the neurological problems that accompany CFS and illnesses like these as well as other illnesses where people need sleep etc. What they're saying is there are safer sleep meds. Because these specific sleep drugs can cause neurological problems.

They consider what this drug can do in potential and what I will describe below as not being "benefits outweigh the risks" like doctors that don't study the drug will argue. Because of what these drugs do neurologically to the brain. They actually know.

They take cancer patients, accident patients, everyone, CFS people into account when they concluded this from their findings. EG: a person is on chemo and loses the cancer and starts to recover, was really sick from cancer, then the doctor that put him on ativan tells him to quit no problem as it was a low dose so no dependency. It's not true, the person was on consistently. The benzodiazipine has caused a "neurological" change to his brain. Unique to benzodiazpines and z-drugs. The brain off the drug, starts to run too fast. It's starts to process everthing too fast, and little stimuli, is too much for the brain to take in. And this person, is now going to experience getting sick because the abrupt quit is too much shock on the brain/body, noise, light, many wear sunglasses and can't look at computers, conceptualizing becomes difficult with the brain going too fast, plus constant flu like symptoms for many, and it can affect gastro, cardio and other internal things etc., therefore not able to function, for 6 - 18 months or more. So because of this, the person that recovered from cancer, or recovered from lymes, or a car accident, or CFS just got sick again. Many lose homes. Read below. This can be controlled with a slow taper so the brain can get it's calming mechanism back, while to drug is being slowly reduced.

As well, on the drug people get irregular heartbeats too fast or too slow, told it's not the drug. Many other things. Told it's not the drug. It's the drug.

So the doctors I listed, cover everyone. It's about side effects. And getting sick on top of it for some, is why it's called benzo illness. On top of what I explain below, people can eventually end up feeling as sick on the drug as well as coming off. Toxicity. It is made from a chemical that was going to be used for "wood dye". Jack Hobson who got sick writes about it. 7th paragraph down. He tapered and it was easier but still challenging. Much more doable. I came off too fast not being told.
http://www.non-benzodiazepines.org.uk/the-benzo-book.html

The doctors that studied benzos specifically and the people on and coming off realize the mainstream medical community "doesn't realize that these drugs change one of the most serious functions that control every aspect of the human body". So by becoming dependent, not addicted, your brain has lost the ability to calm itself down. And that goes for the central nervous system as well.

So, if your doctor doesn't learn this, this type of fast brain activity that many feel here, is NOTHING, not a drop in the hat, compared to the fast brain activity one will feel coming off a benzo or z-drug with the right genetics if tapered too fast after becoming dependent. Many do not realize the enormity of what this feels physically like. I do, so I'm sharing it with you. And I am not a drug addict and was never on other meds.

PLUS, the drug, has taken the GABA receptor needed to slow down "the brain activity" and central nervous system activity, and made the brain and body, (Gaba receptors in gut) stop producing it. THIS is what I'm desparately trying to explain to you. I couldn't think of the words. So it would be like what many feel in fast CFS brain activity here before they remedied it with a benzo or z-drug, BUT, X 100. Make sense? This is nothing compared to what a benzodiazipine can do when taken off too fast, or in tolerance trying to come down in a taper and not having the having the mechanism to slow the brain down from processing and firing. That's one reason I say, catch22.

People lose the ability to balance a checkbooks, do a grocery list, normal daily things as the brain is in mach speed. Okay, stronger than CFS. Jack Hobson compared it to Babesiosis (Lymes) and he slow tapered and there are different levels of severity, if you read his book excerpt. He didn't come down as fast as I did. Outerworldly. What you experience here, and what I have neurologically from CFS like many here, doesn't come close. We're talking about a chemical injury.

Plus, the excitory nuerotransmitters, also go through the whole body. So body vibrations people feel here, are again nothing compared to body vibrations going 100 x's faster, and with the protective coating stripped off the nerve from the drug. Then pain plus outerwordly fast movements. Muscles contracting and not releasing as the body has lost the ability to calm. And many other physical symptoms in a brain and body that's going too fast. Slow taper controls this. If no slow taper, 6-18 months to heal. Or more. That's why it called "syndrome."

And it's constant and chronic. Tapers control it. Freddd knows and this is why he said, it can be uneventful if done right and tedious. He's 100% dead on. But, many people on, do not find this out, until they get side effects on or come down incorrectly. And often, if one comes down to fast and they want to go back on to taper again, they go on a merry go rounds seeing docs if they are able to function doing it, who have no idea how to taper one off. So people get on the drug, and are told to stay on for life unless they find forums and get educated.

The media is told by doctors, people are addicts if they reinstate. Not true, people can't function with physical and mental symptoms, pain, and a brain/ mind processing and firing a thousand miles an hours. And no sleep. Non. Most doctors do not learn what I shared with you and the other doctors I posted would concurr with what I have.

With a mind going this fast, and body sensations with pain traveling fast, it can render a person totally non functional. Hence the lawsuits.

If doctors don't know this happens, or deny it, how can they help patients taper? If a doctor says, you're on a low dose you won't be dependent, he just set you up for a maybe you will become dependent being told you won't. It's not the dose amount. It's the CONSISTENCY DAILY AMOUNT ETC.

That's what changes the brain.

So, last, Dr. Malcolm Lader studied all of this. He wrote this paper, saying dependence happens on "low therapuetic doses" and he talks about side effects. This is a really informative paper that people on benzodiazipines and z-drugs NEED to read. Keep in mind, he like Dr. James Wright at the University of British Columbia that I met, has a few degrees too, one degree specifically in pharmacology like Dr. Wright. So, this is NOT about sleep meds are bad. These guys KNOW MEDICATION. It's what specifically what they studied. They are SPECIALISTS in regards to medication. It's about, side effects from THESE SPECIFIC sleep meds can be bad and the patients are not told. And the side effects can be as bad or worse than why the person took the drug in the first place.
http://www.benzo.org.uk/lader2.htm

I'll add extra, the ministry of health in the UK did take funding from the pharmeceutical companies. 30 years ago Dr. Lader proved the drug can cause brain shrinkage. It's more extensive in this article I linked. (He's been trying to help a long time.) The meeting was canceled, the documents covered up. They surfaced Nov. 2010, 30 years later. They said "sealed and to be opened on 2014." Since uncovered, they are hoping perhaps it will open the way for another class action suit like I posted happened in the 80's.

"Functional" change "making things go too fast" doesn't show up through scans. But "structural" changes (you can see the brain structure/shape when scanned) do show up. There's more on the neurological in the link. In this link, it also explains how fast one's brain can change on the drug.

Therefore, this drug can cause, neurological injury. Typically from coming off too fast. Or on long term. But it's highly individual genetics a factor.
http://www.independent.co.uk/life-s...ked-to-brain-damage-30-years-ago-2127504.html

It was only 15 people he scanned. Remember, this was buried by the "ministry of health." They could argue the patient's brain wasn't scanned before the benzos to prove it was the benzos. And, half the people had obvious or signs of structural change. Some atrophy. These are the original documents referred to above and the scans are at the end. Unfortunately if one doesn't understand benzos, reading through, one may not realize then many of these entries were by doctors that didn't understand the drug either. Lot's of misinformation passed down for decades.
http://www.benzo.org.uk/amisc/mrc82.pdf

So, most people on these drugs, are not addicts, they are on because they don't know how to get off. Slow taper. That's what Freddd and I were talking about.

Here's more recent history. Keeping in mind tapers can take a long time, but, symptoms can be mild mild mild. Okay? If a patient controls it. NOT the doctor. Dr. Ashton who studied this wrote that. BUT, in recent meetings before public health minister Ann Milton, a Professor John Strange wanted to rewrite the taper stating it to go way too fast. This will make people sick coming off, it can do what I explained to you. They argued. He tried to omit the proof. Many of us (I do what I can to help spread awarenss) wrote in to have his testimony struck. Why? Member of Parliament Jim Dobbins, and activist John Perrot uncovered Genus the makers of Ativan paid the professor. When you read "addict" they're not addicts, they were stuck on the drug because the SIDE EFFECTS like I explained above are too strong, and they are not told how to come down because their prescribers don't know how to get them off. Or they don't believe the person has physical side effects as they didn't study the drug. When you read things like a "strong dependence, or ingrained dependence" it just means the change was more extreme. They also were not told it would change the brain. "Involuntary" or "Accidental" addiction it's called because of not being told it would cause a dependence. Some doctors do tell people "dependence" unwittingly playing down the side effects as they don't know a)how the drug works, or b) realize the enormity one can feel with this type of change. Some doctors think GABA supplements will stop symptoms. They don't understand less and altered GABA receptors are not accepting GABA. Some try adding other drugs, again they do not do anything to GABA receptors so they can't slow the brain or body. But slow slow tapers will get them off eventually.
http://www.independent.co.uk/life-s...th-policy-was-paid-by-drugs-firm-2325928.html

There is a lot of history to these drugs. Everyone on a benzo or z-drug deserves to know the truth. It's real. If you choose to come off, slow taper. As Freddd said, micro daily is easiest. (Sorry for dropping your name Freddd but you "get" the drugs.)

When you hear about people reinstating after detox, it's because of the side effects. Google Stevie Nicks. She writes about how hard it was. She dropped out for a few years recovering as she came off too fast like I did. Steven Tyler writes about the side effects. He was one of the small % that took it for recreation. Most are just regular people like you and me not abusing told they were safe.

I do NOT want to scare anyone, I am passionate about educating people. I do not like how this drug is being overprescribed from ignorance bred from conflict of interest. It's simply not fair. Now you know, if you start to feel strange on it, can't sleep, feel panic, get burning, stinging, muscle tension, it's tolerance. And it can be fixed with multiple dosing and if once chooses to come down, crossing to a longer life benzo to taper from depending on what one is on. It can be uneventful going slow so one is then just fine with NO drama.

Dr. Aston is around 70 and has known about this for years but too much money involved kept her info on the sidelines. She explains this but her taper can still be too fast.
http://www.benzo.org.uk/manual/

Modern docs have never heard of this or some dispute it saying it's outdated. This is one of the only references explaining benzo and z-drugs at length and most won't read about it. It never becomes outdated how we take in air to breathe. Therefore, it never becomes outdated how the drug changes the brain. Unfortunately it's written for what the drug was intended, anxiety but, it has everything one needs to know about the drug not with anxiety in order to learn.

Every single person on this drug, had a right to know what was possible before they took it. That is called informed consent and it's not being given. Then you decide, do you want to try a benzo or z-drug? Or do you want to try a different sleep med? It's your body and your brain.

I really love people. I hate that this has been happening for such a long time. Even the celebrity docs, are not telling the truth only because they don't know it, to tell it. There is a lot at stake with "medicine" today.

Imagine paying 30K for detox from a benzo only to reinstate the drug because they didn't tell you about the side effects and why you get them. And 4 months out you still have them and it's intolerable and you're told it's not possible. Happens everyday. I've met many. The other addicts, are fine because those drugs don't alter the brain/body calming mechanism. And they're addicts, you're not. But these facilities put everyone together. This is being addressed in Parliament. It's wrong.

Doctors adding other drugs making a cocktail as they don't recognize physical side effects that show through emotion is being addressed.

Thanks Heapsreal. I really appreciate you being such a diplomat. Most most sincerely. So we need to sleep. And the doctors I listed, do understand CFS and bacteria infections causing neurological problems. Unfortunately they show as you've read, benzos and z-drugs, can also cause neurological problems. Ironically, one aspect of that, if dependent, it has then changed the function of the brain which can cause it to be in a state of hyperexcitability with no calming mechanism making it to go too fast IF one is taken off abruptly, or too fast a taper, so slow taper. And this speeds up the cns controlled by slow taper. But at least people know. It's your right.

This also gives you a better idea about public people you read about, acting strange that are on benzos. They don't know this info anymore than you do, many of them. There's a couple of high profile people in the paper right now where benzos are referred to. People in the community know why. They're probably in tolerance on a benzo and have no idea it's the drug making them feel weird therefore self medicating with alcohol. And it's projected, they're on benzos and a drinker. Many non addicts and non drinkers or mild rarely drinking types, in tolerance, don't know why they feel emotional and need to self medicate. It's a mess.

I can't believe that doctor wrote the drug protects the brain since it can go too fast coming off the drug if one is dependent and comes off too fast.

It all depends on genetics. As I said, some quit no problem. Some have fewer symptoms. I just wanted you to know both sides.

Sporadic dosing like some here, is the only way to make sure your brain won't change.

It's a gamble if you take it daily. Once or twice a week is a surer way to avoid dependency. That kind of thing. Doing Ambien 2 days, klonopin 5, not only are they different equivalencies so your dose amounts can make one not sleep, then sleep, but more importantly, they go to the same place in the brain. So that's 7 days between the 2 drugs. Enough then to become dependent. THAT rule applies to every single benzo and z-drug. There is not one, that will change the brain less than the other. Regardless of what you may be told. They do the same thing. Don't forget that. So, once or twice a week, then and the other days, use an anti histamine or something else non benzo or z-drug.

If you've been on daily now already and may be dependent and don't know it, this will not work. You will be in the beginning of withdrawal the days you are off. You may not feel it unless you were completely off for 7-14 days though. That yo-yoing is too much stress for the brain.

I'm a non drinker as I used to be a hardcore fitness girl (before I got sick ) hence my name runner. Too many carbs is why. Just a little background. lol. xoxoxo

 

[Calathea]

Could some kind person give me a VERY basic explanation of what these GABA receptors are and how they work? I don't have a science background and I find the usual scientific explanations on this board incomprehensible, due to that and the brain fog. From what I've gathered, this is involved in the horrible reaction I've had to coming off gabapentin (which has been almost entirely physical symptoms, by the way). I was on the gabapentin a few months, raising it by 300mg a week until I got to 3000mg, then reducing it by 300mg a week. The withdrawal symptoms, including insomnia, started when I started to reduce the dose, and intensified enormously when I completely came off it a few weeks ago. Jitteriness has also been a major problem, including physically shaking, plus low body temperatures, GI upset and nausea.

I was getting annoyed with my current anti-nausea med (buccastem) tasting so vile that it put me off my food, so my usually-excellent GP put me on metochlorpramide (Raglan/Maxolon) without warning me how appalling it can be. It took me three days to realise that it was causing me the problems, partly because I thought it was a flare-up of the gabapentin, partly because it never occurred to me that an anti-nausea med could do this, and partly because I was so out of it that I couldn't think straight. In fact, I couldn't even see straight or understand speech for a lot of the time, was shaking badly, couldn't stay properly awake and couldn't sleep, and had a nightmare reaction when I took co-codamol and valium for migraine. It seems to be a similar sort of reaction, just a worse one, so I'm wondering whether this involved the mysterious GABA receptors too. Anyway, I realise that this may take a while to recover from, but I'm generally starting to worry about how my sleep is not snapping back to its usual timing and quality. I've had several years of proper sleepiness and sleep onset due to the darkness therapy, and it's downright unnerving to be back to lying awake for hours every night.

Do you know anything about how long it's safe to take benzos for at a stretch? I find them very useful for occasional use. I use 20mg or 10mg temazepam very rarely, for no more than three nights at a stretch, and mainly if for some reason my sleep pattern has got out of synch (thankfully extremely unusual these days) or if there's another extraordinary reason for not getting to sleep. With valium, I have 2mg tablets. I either use them for anxiety, which generally means PMDD. Thankfully I don't get bad anxiety with the PMDD every month, and I don't usually get it for more than 2-3 days at a stretch, so I've never needed to take it for anxiety for more than a few days at a stretch. However, I recently discovered that co-codamol taken together with valium works well for me for muscle pain and migraine, and absolutely nothing else works. The co-codamol alone has enough side effects to put me off using it except for when the pain is really bad, but sometimes I do get bad stretches of muscle pain or migraine that go on for weeks, and I don't want to be using valium for weeks.

Incidentally, my mother, whom I broke off contact with in June, has been using 5mg valium at night for an eye problem for years. She's been on and off it and always claimed she never noticed dependency or other issues, but I did wonder. She has possible psychiatric issues, a trainee nurse friend of mine says it sounds like borderline personality disorder, and the last I heard, there was some sort of weird "epileptic-like" (whatever that means) problem going on.

 

[runner64]

Hey Calathea, gosh, I'm sorry about the trouble with Gabapentin you're having. You don't need anything to complicate already being sick. I knew it had a withdrawal for many but I didn't know it was as physical as it obviously is. It could be why you have insomnia as MANY get that coming off of Gabapentin too. We see it on benzoboards as they're tapering this too. I'm not there anymore but I used to be there and another board helping people taper off benzos.

If someone here can't help with that you may want to go to benzobuddies and ask Phriannon the best way to taper off. You can post a question for her in the other medication section or pm her. She's very knowledgeable with many of the psychotropics. I have little experience with Gabapentin other than knowing it had some type of withdrawal.

They're not too sure about the "mechanism of action" of gabapentin it seems. They know it acts like our natural GABA that sedates. But, it says it doesn't go to the GABA receptors like benzos or z-drugs. You could listen to the podcast I linked you from the pharmacologist who studied it as well. They tell the truth about how it was "marketed" in the beginning as I've listened to it, but I haven't listened all the way through. Maybe someone else here knows.

http://www.medilexicon.com/drugs/neurontin_783.php#MechanismOfAction

The GABA receptor is what our natural GABA goes to and acts on it, binds with it to calm and sedate etc. So I'm not sure how Gabapentin is effective without not acting on those receptors. Benzos and z-drugs do go to the GABA receptor like our natural GABA.

As far as how safe is it too take a benzo past 3 days? With the links I posted here, if you take it daily past a week, 2 weeks, that is enough time for the brain to develop a dependency as it's consistent. Like I said, it's a gamble. It's genetics.

Your mom, may not have developed a dependency. Genetics. But if she is having other issues, when you learn how drug works, she could be having a milder form of withdrawal, off the drug if she quits c/t that can extend, but she doesn't know that's what it is so it's seen as borderline personality disorder. This happens a lot. And one danger of benzos are they can cause seizures etc. when off cold turkey. I can't believe I never posted that above but I didn't. These smaller ones you desribed however can happen as well but not be linked to the drug. That's in what I posted. It makes it confusing for people.

Reglan info says it seems to bind to the Dopamine d receptors.

I'm familiar with the history about Reglan and if you google suits it's been ongoing for a while. But it doesn't sound like what you're describing.

All I know is gabapentin can cause insomnia while coming off, and other symptoms but I didn't know what....... Too much cat and mouse for you.