How do we treat severe insomnia for cfs/me

[Calathea]

Hang on, why should I be tapering a drug I've been off for over three weeks? Are you saying I should start it up again?

 

[runner64]

Oh gosh no. I misread, I thought you meant you were still reducing 300mg per week STILL. Then perhaps slowing it down would have been the answer but that said, I always recommend checking with those familiar with the specific drug you are enquiring about. That's the best way to go with meds. Find others that have taken the same one. It's not like benzos or z-drugs if that's what you're concerned with.

If no one comes by here as they experienced gabapentin, post on the board I told you about. Many are coming off of gabapentin there or have come off of it and they will gladly share their experience with it to you. I understand the other two specifically, not that one specifically, just very generally. xo

 

[Calathea]

Thanks, and thank you for the earlier explanation. I'm still a bit lost, I'm afraid. I don't actually know what GABA is.

Since I'm already off the gabapentin, I'm not looking for tapering instructions. I'm trying to find out how to deal with the withdrawal syndrome which I am still experiencing, and I am trying to find out how withdrawal has affected my body so that I can work out how to handle it.

 

[runner64]

I understand. Gosh I wish you weren't having symptoms. And all the more reason to check with those that came off you know? So you can get a closer picture where you are at with it. Maybe it will be easier to handle. I don't know the cycle of gabapentin symtpoms if that's what they are Calathea. I'm really sorry.

I'll try again with the GABA. It's a chemical in our brain, a neruotransmitter that is responsible for relaxing us and making us calm and sleep and that kind of thing.

It has to go to "receptor sites", in that there are sites distributed, through out brain and gut called GABA receptors. Or Gaba receptor sites. It goes to a part of this site and makes contact, and the contact makes the "action" of sedation take place.

Does that make sense? It needs those GABA receptor sites to go to in order for this sedating action to take place.
That's an example of a "mechanism of action". Maybe you know that anyway. Probably.

Here's a picture. You'll see our natural GABA goes to a spot, benzos and non-benzo which are the z-drugs that go to the same spot on the GABA receptor site. Other anesthetics for surgery that sedate like propofol. Barbituates sedate. Notice they all go to the same site.
http://ccforum.com/content/12/S3/S4/figure/F1

Barbibituates are dangerous as you know. Benzos are close to them. One difference that encouraged benzo and z-drug use was it's easier to OD from barbituates, therefore they deemed benzos as a safe alternative as people could apparently take more and not OD. But they failed to learn what the action is so neuro trouble because of it, and what that feels to a person and how the drug takes the brain/cns function down. As well, if people drink and take benzos, being they're a cns depressant, it's a very bad mix and therefore dangerous. So in some senses it's close.

They explain here benzos, z-drugs, barbituates, potentiate GABA. Potentiate, enhance, make it stronger.

It says benzos cause less physical dependence. That is very unfortunately not true. Most are not or were not psychologically dependent on benzos but physically. They don't list all side effects on the link as well. It's a generic version for basic understanding.
http://www.flashcardmachine.com/barbituates-and-benzodiazepines.html

 

[Sammy]

Hi Heapsreal! Thankyou for not being offened as it wasn't my intention. I don't have the answer either about improving sleep without some of these meds when one has a neurological cause creating the problem. I'm not getting much. One does what they need to and understandably. I don't want to beat a dead horse. If you wanted to validate what I have posted, contact the doctors below as they ALL SPECIFICALLY studied the drug. I'm very educated with these drugs specifically and that's the only reason I posted what I did.

Unfortunately benzos and z-drugs worsening sleep on and off the drug aren't theories. It's from the way the drug changes the brains function. The mechanism of action I explained on the klonopin, valium thread reply #68. The action of the drug is what gives sleep, and what ultimately takes it away. This drug action, is one of the reason people get bad side effects eventually on it, and coming down. Catch22. And this change is specifically why so many, have a hard time coming off.

I still think some misunderstood in that, I know people need sleep. I understand by taking specifically benzos and z-drugs, from the aspect of CFS benefits, they help. therefore doctors like Cheney recommend it. All I'm saying, is most of you do not understand the other side of the coin. I'm not disputing the need for sleep. I just warning you guys specifically what THESE pills really do depending on genetics. That's all.

Progesterone has no influence on GABA receptors. Nothing does. And as the reply on the thread I posted in reply #68, they can come back altered not as effective. They are not going to study something to "fix" when they deny there is a problem.

The 2 doctors I listed, Dr. Malcolm Lader, Dr. Ashton, are the doctors that studied the drug, and helped people come off. They have been doing this for over 30 years. The research doctor I met at UBC a few weeks ago to discuss my cns injury from it, and ask why is this still going on why are people not told? It's a business $$. He is degreed in Pharmacology, Anesthegiology, and he knows how the drug works. "Mechanisms of Actions" of drugs period are what he does for a living. He's one of top in this field. His group Therapuetics Initiative, studies the actions of drugs and how they work on the brain etc, and prescribing behaviors of the mainstream medical community. He will back up that everything I am explaining to you, is in fact, the truth. Contact him. He'll tell you. He will explain this, just the way I did.
http://www.apt.ubc.ca/Popups/Dr_James_Wright.htm

That's why he endorsed this book by Joan Gatsby who is also an activist in the community. We've spoken. The reason it's hard for people to come off the drug is the side effects from how the drug change the brain function. He's the 2nd doc down. Dr. Malcolm Lader the first doctor listed here is who I mentioned above and I've corresponded with him.
http://www.addictionbyprescription.com/testimonials.html

Ove Carlsson in Sweden. He won his courtcase regarding benzo side effects and it took 3 years for his cns and brain to heal. And he wrote this book. I've corresponded with Ove in length. He'll tell you, it's the truth.
http://evoca.info/HemsidaE.html

Non listed are drug addicts or abused benzos. If you become dependent, this can happen. This is why people slow taper, some have a hard time controlling symptoms/side effects, some have it easier.

Dr. Peter Breggin that was mentioned here, he wrote "Your Drug May Be Your Problem, will corroborate what I said is in fact, the truth. This is why he is used as "expert witness" in benzos cases, psychiatric drug cases and more. Explaining side effects and why. Read the first quote and what he says about that lawyer. This is the lawyer I found 3 weeks before my statute was up. I would have won in mediation but gathering my info took to long. Email him. He'll tell you I'm telling the truth.
http://www.naturalpedia.com/Mosher.html

Geraldine used him due to Ativan side effects and won her case. Geraldine Burns. She's not a drug addict either but unwittingly became dependent. She worked with the Dr. Ashton above who wrote the manual explaining the drug, and symptoms/side effects, reasons why, how to come off. And the z-drugs, Ambien, Lunesta, Sonata, Imovane, are all in Dr. Ashton's manual because they go to the same in the brain, the act just like benzos. Same potential depending on genetics. In this link it says benzodiazipines, dangerous side effects.
http://www.bcnc.org.uk/geraldine.html

The doctors I'm listing, specifically work with these drugs and understand it. The doctor like Cheney on this thread along with many others, are not interested in that information. And they are not even taught this, as it's not a requirement to learn this. They are ONLY interested in what can help you sleep with CFS. One side only.

YES, they help with CFS and "benefit" CFS in this way. I couldn't agree more. I agree. In this people need to sleep, especially with this. But do you know what else they do? This is all I was sharing.

Google Benzobuddies, you'll see how many have these side effects on, and side effects coming off, and if one posted and asked about these drugs there, you'll find out I'm telling the truth.

It's like the fluoroquinilone antibiotics I'll use as an example. How many know, they can rupture tendons? And can cause irreversible damage to the central nervous system. Google fluoroquinlone victoms. Many people trying to sue because they weren't told. AND, they're still being prescribed by doctors today. This has been known to happen, for years. This is the exact same pattern happening with benzodiazipines and sleeping pills. (Z-drugs).

There is no "profit margin" educating the mainstream medical community, or the general pubic and getting the truth out there. I'm just letting you know these side effects and injury are a possibility depending on your genetics and this is why the drug was never intended long term, what you weren't told. You can avoid strong side effects if you SLOW taper IF in the future you decide to come off as you are now dependent physically. That's all. That's why I'm writing my book. This is why I am an activist in the community.

Dr. Ashton, Dr. Lader, Dr. Reggie Peart, member of Parliament Jim Dobbins, activist John Perrot, Barry Haslam, Stephanie Holiday, Earl of Sandwich who has a family member still healing from the injury, are forerunners in Parliament in the UK right now, still trying to get the mainstream medical community to learn about this in order to tell people the dangers and the bad side effects, and help them come off humanely through slow tapers if they choose too. They are the only country globally addressing it and have been for years. Public Health Minister Ann Milton is one of the first in govt officials on the publics side. I believe it was one of the Kennedy's in the US who tried to bring this forward as J. F. Kennedy was "caught" in this on a benzo. Unwittingly dependent. It's about the $$.

Hi Runner64,

Does Ciprofloxin pose the same risk as fluoroquinilone???? As my intolerable insomnia started 6weeks into a course of Cipro(along with intolerable anxiety)which I strongly think is the cause of my insomnia.... or at least one large part of the cause.

Cheers!!

 

[Sing]

runner 64,

Thanks for the warnings, information and support in you posts. I would like you to re-post any link for Gabapentin though. Pfizer seems to claim that it doesn't go to GABA sites or even know how it works, but it does seem to have a Gaba effect, of course, and why else would it be called that? Anyway, do you have a link which describes how long term use of it might damage the brain?
I get it about barbiturates, benzos and x-drugs, but would like more information on Gabapentin. Thank you!

 

[heapsreal]

runner 64,

Thanks for the warnings, information and support in you posts. I would like you to re-post any link for Gabapentin though. Pfizer seems to claim that it doesn't go to GABA sites or even know how it works, but it does seem to have a Gaba effect, of course, and why else would it be called that? Anyway, do you have a link which describes how long term use of it might damage the brain?
I get it about barbiturates, benzos and x-drugs, but would like more information on Gabapentin. Thank you!

Sing i have also read that gabapentin and lyrica dont work on gaba receptors, i think initially they thought it did but they seem to think it works like a calcium channel blocker which can help with pain modulation and have sedative effects.

cheers!!

 

[Calathea]

I don't know anything about calcium channel blockers. Would you be so kind as to explain a little, including why this would make withdrawal so bad?

 

[Sing]

Hi heapsreal! I wonder what a calcium channel is, and what a blocker would be? Must have to do with nerve transmission but it is beyond my biological knowledge.

 

[heapsreal]

yes, calcium channel blocker simplistic slows down certain nerve transmissions, they are commonly used in epilepsy as well as treating high blood pressure as well as chronic pain/nerve pain.

 

[taniaaust1]

Calthea .. I think it was you who asked the question, sorry if its another. Someone asked how long is it safe to take Temazepam for.

My specialist said to take no more initially then 5 days in a row and to only be taking it like that with the goal of bringing ones sleep cycle forward (eg take slightly earlier each night). Then no more then twice (three times at the very most) per week.

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!!!

I think that may be starting to happen with me . As I want to avoid taking temazepam too much (doctor only sounded happy with me taking it twice a week thou he did say I could take it 3) Ive taken the antihistamine again for the past 3 nights but the past two nights the antihistamine, it hasnt seemed to work as well as previously.

So Im now considering what to increase or what to do.. I can up the antihistamine or aybe I should start seeking yet another thing to throw in the whole sleep mix (I also take melatonin).

Past two nights its taken 90mins for the sleep things to kick in.. and Ive been taking them at 2am cause Im still trying to bring my sleep cycle forward. Past two nights its been a 3.30am sleep time which Im still greatful for as its far better then my other 6.30-9.30am sleep time.

I see a new ME/CFS specialist tomorrow, so I'll see what he suggests I do.

 

[Calathea]

Why don't we start a new thread called something like "Working with potentially addictive meds"? It's a big issue, and it doesn't just cover sleep meds. Runner24, would you be willing to start the thread? You seem to know a good deal about it, and would be well placed to write a basic intro and give a list of meds which can potentially cause problems with dependency, something I think would be very valuable to have at the top of the thread. Perhaps we should put the list together as part of the thread (since it's quite a job, unless anyone knows of a good one online which we can copy), and whoever started it can keep on editing the top post as required.

 

[heapsreal]

Calthea .. I think it was you who asked the question, sorry if its another. Someone asked how long is it safe to take Temazepam for.

My specialist said to take no more initially then 5 days in a row and to only be taking it like that with the goal of bringing ones sleep cycle forward (eg take slightly earlier each night). Then no more then twice (three times at the very most) per week.



I think that may be starting to happen with me . As I want to avoid taking temazepam too much (doctor only sounded happy with me taking it twice a week thou he did say I could take it 3) Ive taken the antihistamine again for the past 3 nights but the past two nights the antihistamine, it hasnt seemed to work as well as previously.

So Im now considering what to increase or what to do.. I can up the antihistamine or aybe I should start seeking yet another thing to throw in the whole sleep mix (I also take melatonin).

Past two nights its taken 90mins for the sleep things to kick in.. and Ive been taking them at 2am cause Im still trying to bring my sleep cycle forward. Past two nights its been a 3.30am sleep time which Im still greatful for as its far better then my other 6.30-9.30am sleep time.

I see a new ME/CFS specialist tomorrow, so I'll see what he suggests I do.

Hi tania,

Sometimes alternating between different antihistamines every few days or weeks can help u to avoid tolerance and most u can buy over the counter. One called periactin has studies showing it improves deep stages of sleep and is also used alot for migraines and nausea.

cheers!!!

 

[runner64]

Hi Runner64,

Does Ciprofloxin pose the same risk as fluoroquinilone???? As my intolerable insomnia started 6weeks into a course of Cipro(along with intolerable anxiety)which I strongly think is the cause of my insomnia.... or at least one large part of the cause.

Cheers!!

Hi Sammy, ciprofloxin is a fluoroquinoline. There's many different names of this particular antibiotic. Levaquin, ciprofloxin, and more names.

It's not your imagination if that is what you are experiencing with Cipro. When you look at the top left anxiety and insomnia are a side effect and the side effects list goes on as they get more serious.
http://fqvictims.org/fqvictims/index.htm

They come under many names so one would have to google to get the names of these antibiotics in the same family.
http://www.antibiotics.org/resources/side-effects.pdf


People on benzos z-drugs should never take fluoroqinolones due to them working on the central nervous system. There's much safer antibiotics without their history. Dr. Ashton that studied this has it listed. They call it "floxed" when someone gets side effects from fluoro's. In working with people tapering benzos, I've met a couple people who unfortunately were new to these meds new to these med, and they had to heal from 2 cns deals, benzo, and flouroquinolones together.
In point #3 and excerpt of Dr. Ashton's with benzos
http://www.benzodocs.com/ashtonmanual/bzcha00.shtml

 

[runner64]

runner 64,

Thanks for the warnings, information and support in you posts. I would like you to re-post any link for Gabapentin though. Pfizer seems to claim that it doesn't go to GABA sites or even know how it works, but it does seem to have a Gaba effect, of course, and why else would it be called that? Anyway, do you have a link which describes how long term use of it might damage the brain?
I get it about barbiturates, benzos and x-drugs, but would like more information on Gabapentin. Thank you!

Hi Sing, you're welcome. I'm glad that you found this information helpful. As I said, I am not super familiar with Gabapentin other than what you guys already know. I'm right beside all of you there. As well in that it "enhances" our natural GABA chemical on some aspect but it doesn't seem to go to the GABA receptor for contact in order to make that action take place. So it does confuse me somewhat like a few here.

That said, perhaps listen to the podcast from the peers of research pharmacologist/anesthesiologist, Dr. James Wright who I met and maybe they'll talk about potential adverse affects and what they would be. I only had time to listen to the beginning and the intro started out discussing how it became popular only because of marketing, and has less efficacy than claimed. Apparently it is good for some, but not near as many as claimed. That's why I like their group. It's more honest information for the general public. It's unfortunate it's hard to come by the info, search and find etc.

I wish I could help you more with that one but I really can't. This is from his group "Therapeutics Initiative."
http://www.ti.ubc.ca/podcast/ti-podcast-letter-75-gabapentin-pain-new-evidence-hidden-data

And last, when you see that benzos go the same receptor as the barbituates, makes them not look so benign does it?

 

[runner64]

Hi tania,

Sometimes alternating between different antihistamines every few days or weeks can help u to avoid tolerance and most u can buy over the counter. One called periactin has studies showing it improves deep stages of sleep and is also used alot for migraines and nausea.

cheers!!!

Cheers Heapsreal!!! Is it sunny where you are right now? Maybe that will put me too sleep. I'm getting on a flight!

You got it. She's got the nail on the head Tania! Switching out. I might add, 5 - 7 days has been known to be enough time for the brain to change with a benzo and z-drug. 3 days in a row might be a safer bet and jumping to something else. Back and forth that way. Many benzo people tapering as I said, use Atarax and Vistaril to help them sleep coming down. They are the older stronger prescription anti histamines that were very successfully used for anxiety and insomnia back in the day.

 

[Sing]

Hi Sing, you're welcome. I'm glad that you found this information helpful. As I said, I am not super familiar with Gabapentin other than what you guys already know. I'm right beside all of you there. As well in that it "enhances" our natural GABA chemical on some aspect but it doesn't seem to go to the GABA receptor for contact in order to make that action take place. So it does confuse me somewhat like a few here.

That said, perhaps listen to the podcast from the peers of research pharmacologist/anesthesiologist, Dr. James Wright who I met and maybe they'll talk about potential adverse affects and what they would be. I only had time to listen to the beginning and the intro started out discussing how it became popular only because of marketing, and has less efficacy than claimed. Apparently it is good for some, but not near as many as claimed. That's why I like their group. It's more honest information for the general public. It's unfortunate it's hard to come by the info, search and find etc.

I wish I could help you more with that one but I really can't. This is from his group "Therapeutics Initiative."
http://www.ti.ubc.ca/podcast/ti-podcast-letter-75-gabapentin-pain-new-evidence-hidden-data

And last, when you see that benzos go the same receptor as the barbituates, makes them not look so benign does it?

I listened to this podcast and would recommend it to anyone on Gabapentin or thinking of it. This group, Therapeutics Initiative, is an independent organization based in British Columbia, which tries to analyze all the data on commonly prescribed drugs, to find their real efficacy, side effects and dangers, rather than the views of these drugs promoted by the drug companies. There is a lot of good information on their site: www.ti.ubc.ca

 

[runner64]

I listened to this podcast and would recommend it to anyone on Gabapentin or thinking of it. This group, Therapeutics Initiative, is an independent organization based in British Columbia, which tries to analyze all the data on commonly prescribed drugs, to find their real efficacy, side effects and dangers, rather than the views of these drugs promoted by the drug companies. There is a lot of good information on their site: www.ti.ubc.ca

Thanks Sing!! And there are not near enough groups like this, they tell the truth. This is what they do, it's their job and what they specialize in. As Sing said, facts on efficacy, side effects, and dangers in regards to drugs is 100% what they research.

I'm really glad you find this helpful Sing. I really am. People have a right to the information on all sides about what they are prescribed. It's a time for critical thinking.

So, if one contacts Dr. James Wright, as I said, he'll back my information in regards to benzos and z-drugs. It's not just about dependency with those 2 that work exactly the same way, it's about the potential physical "side effects" coming off the drug too fast IF one becomes dependent. When one is dependent to a benzo or z-drug, that signals the drug has taken away the brain and central nervous system's ability to slow itself down.

And the drug has to be slow tapered to allow for that "function" to slowly come back. Losing that "function" is what creates side effects for these two particular drugs.

And I'm speaking from experience, it rendered me neurologically and central nervous system wise non-functional for a long time while healing. (I am only on doxycycline for my infection now.)

Research everything. Go to patient forums to find out what "real" people are experiencing. When you're told not to go to the internet to read what others have experienced, GO to the internet and look up what others have experienced.

There's a lot to research from on this thread as a starting point with the above mentioned meds. xo

 

[Calathea]

Runner64 - any chance you could start that thread on working with meds which may cause dependency, as I suggested earlier on?

 

[runner64]

Hi Calathea, I'm sorry. I never answered you on that.

I really wouldn't know what to say to start one in all senses. Many members on the forums I worked at were knowledgeable in the psychotropics and painkillers, (people not abusing medication but taking as prescribed), and found those psychotropics to have what some call "discontinuation syndromes" which many of us found to be misleading as it really didn't prepare the individual for the length some of these meds could have upon discontinuing. As well as much of the time, they were told by prescriber, it was them, not the med, which wasn't the case. To have any kind of "discontinuation syndrome" illustrates a dependence was formed doesn't it? And these even if showing through emotion, crying, depression, etc., is from the brain losing homeostasis, albeit less severe functional changes as mentioned above, and having to go back to normal which can then take some time.

Cymbalta is known for brain shocks upon dicontinuing and many are having to open capsuls and count beads to go down in mg's as the mg's tablets are not made small enough to taper. They have a whole support forum dedicated to it. This is off labeled now for pain, fibro etc. Many don't find it reliable as we discussed with Gabapentin and hard to discontinue with the brain shocks.

Here's the forum as I listed forums for the benzos and z-drugs. Many people taking these are not taking them for depression but pain conditions. Like I said, off labelled.
http://www.cymbaltawithdrawal.com/forum/9-weaning-off-cymbalta/

Then if one goes to paxil progress, that is a site that helps those with meds with discontinuation syndromes, "withdrawals".

That's all I can really offer as I only have personal experience with what I listed in this thread. Those 2 added sites can help those with concerns of dependence issues in some form with other drugs that were "intended" for anti depressants and are off labelled for pain like Cymbalta. Or intended for pain like Gabapentin, but have claims of less efficacy and have a withdrawal therefore some type of dependency was formed regardless of level of severity.

That's all I really have. If someone wanted to start one, I'd just copy and paste what I put in this thread on a thread specifically for "dependence".