meds for cfs;anyone use valium?

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artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/20/2006 2:29 PM (GMT -7)   
sad  has anyone tried any of the benzodiazepines, like xanax, valium, klonipin for the fatogue or other symptoms? there's a dr working with klonipin esp. who seems to be getting some results.i thimk the meds suppress interleukins & something else, don't recall, that cause some of the symptoms in some people.the dr who diagnosed me in denver put me on a low dose of valium for 2 wks. & i felt like a new person;it was like a miracle, but you develop a tolerance really quickly & it's highly addictive, so anyone who is helped by it has to take it, taper off, stay off awhile, start over...try finding a dr who will work with THAT. i sure can't, so i'm just on paxil.

artpainter
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Date Joined Feb 2006
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   Posted 2/20/2006 2:33 PM (GMT -7)   
These meds are so addictive, you have to be closely monitored my your md;few are willing to try this;it's a risk, but can be managed if it works, which it doesn't for lots of people;but when it works, it really helps...be careful;don't ever try this on your own.

artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/21/2006 10:41 AM (GMT -7)   
sad  i still can't read the darn replies, opinions, whatever...sorry bad day so far..."significant other" waltzes out to a not-so-necessary to talk as to drink cappuccino meeting without mopping ouur small bathroom floor as promised 3 days ago;i can barely stand, but to work i must go...i'm ticked

Shaper
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Date Joined Jan 2006
Total Posts : 23
   Posted 2/21/2006 12:01 PM (GMT -7)   
Rule # 17 no duplicate posts

Post Edited By Moderator (Foreign) : 2/21/2006 7:54:51 PM (GMT-7)


artpainter
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Date Joined Feb 2006
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   Posted 2/22/2006 10:44 AM (GMT -7)   
ok, sorry didn't read that one...i'll be more careful

Foreign
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Date Joined Jul 2004
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   Posted 2/22/2006 3:15 PM (GMT -7)   
That wasn't for you artpainter, sorry if it seemed that way
Co-Moderator for Fibro
Moderator for CFS
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artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/22/2006 3:51 PM (GMT -7)   
yeah  ok, thanks;i misunderstood, so new here;i'm still having trouble navigating...but doing ok basically.THANKS for post; i really didn'k know what it meant, was going to ask later :-) arthugs to all on every site;this is really helping me, people who understand;you people are wonderful & i thank you so much.

curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 2/22/2006 5:48 PM (GMT -7)   
Hi,I post more so on the crohns board and I saw your post and wanted to answer you question.I'am on Paxil 20mg and as well Diazepam (vialium)5mg have been on this about six month's and it has helped a good bit but not as much as when I first started thoe.I see my doctor this comeing up month and I think that we are going to try something else that has a better effect and does not make me feel like a syobie all the time.Let us know how it goes.
Thanks
Curley......
a.k.a.Mela...........


artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/22/2006 6:02 PM (GMT -7)   
:-)  hey.curly, hi! thanks for post;what was diazepam supposed to do for you? why prescribed? Too strong? some people can't take it without that zombie effect.My current DR doesn't have me on it, but i wish she would let me try it again. as much as i hate the on again , off again deal, it helps all the cfs symptoms like magic;the expert in denver explained why it works for some people & he out me on it  back in '90 for a few wks.take care;feel free to reply . hugs yeah

Foreign
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Date Joined Jul 2004
Total Posts : 674
   Posted 2/23/2006 4:55 AM (GMT -7)   
Hello art
I'm so glad that you are finding the support you need here :)
This place is full of wonderful people and i'm glad to have you a part of it all.
Take Care
Mel
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate


artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/23/2006 5:19 AM (GMT -7)   
:-)  thank you so much for that, mel;it means a lot[i've got a live in partner, but a healthy person doesn't understand the loneliness, depressio,n, fear like you all do;it just means so much.

Foreign
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Date Joined Jul 2004
Total Posts : 674
   Posted 2/23/2006 3:28 PM (GMT -7)   
Thank you :)

Maybe you could get your partner to join the site?? There are other several members who have their spouse's on here as well..good learning experience for them and they help eachother out on understanding and battling this thing. Just a suggestion.

Just to let you know, every monday night at I believe 6:30 PST we have a formal chat in the Fibromyalgia room. Fibro and CFS are in a way closely related, and we normally have a good show of people there. It could benefit you maybe.

Hope to see you around :)
Mel
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate


artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/23/2006 5:38 PM (GMT -7)   
:-)  thanks, mel;i'll look forward to it & see if my partner will join;she's a professional grief counselor & really busy, but i will try...thanks a bunch''...she will make some time if at all possible ...i just asked & she said YES! great idea, mel...it may really help

curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 2/24/2006 4:41 PM (GMT -7)   
Hi,sorry that it has taken me awhile to answer you questiion,but will do so know.The Valuim (diazepam) that I'am on is for depression I have suffered for the last three year's.Foriegn has some good advice as well,my ex use to get on this site so he could better understand what was going on.So maybe if your other half join's in that may take some of the stress off of you.The valium is not to strong but it is like most other med's after awhile they just don't work as well.
Thanks
Curley......
a.k.a.Mela...........


artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/24/2006 5:16 PM (GMT -7)   
yeah  yeah, curly, thanks for the reply;i really appreciate it...did it work at all for you at first? too addictive over time, though;very hard to taper off, stay off awhile, feeling like crud, then going back on & so on & so on...gets old & harder to get off the meds, to be WILLING to;in fact, i found myself increasing dosage to get same muscle weakness relief;i caught it, stopped it.Personally, i wouldn't advise the benzo meds as they are called. They do work for some cfs people some of the time, but they're way too addictive
& i guess withdrawl if you don't taper is hell. I ,,,& all of us want & need something safe, non-addictive & effective ...like i tell people i want a new body!  Thanks again, curly..you are pretty teriffic! :-)

obs ann
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Date Joined Jan 2006
Total Posts : 679
   Posted 2/24/2006 7:19 PM (GMT -7)   
artpainter,
Is this the Article by the Dr. that you mentioned up top there ... where he says "Klonopin or something like it" ... as in, like a benzodiazepine ?

   http://www.immunesupport.com/library/showarticle.cfm/id/3154/

This Website above is for CFS/FMS

See the homepage after the article for more good stuff and natural aids and many more articles.
I love Dr. Cheney. He's been a pioneer in CFS research along with some other Doc, who's name escapes me at the moment.

Gosh, I can't figure what could be wrong with my memory.


Ha-ha-ho-ho !!!


LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 


artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/24/2006 11:27 PM (GMT -7)   
yeah, ann it's the same doc...i like that he's trying different things...controlled, of course, & i'm sure he only uses double blind testing for accuracy;that's where only some of the patients get the real meds;the rest get placebos to rule out the placebo effect, which is pretty strong in some people;give them a lemon drop $ tell them they'll feel a lot better an hour after they eat it & in an hr. or so, they do feel better...rather, they THINK they do. But it doesn't last like the real med or meds would. Klonipin is a benzodiazepine, yes. A fairly powerful one, too, i think;i know what i've read about that plus my doc put me om a low dose of it last yr. for about 5 wks...it helped a little;she didn't want to do the whole course of klonipin like cheyney cause she said she really doesn't know what she's doing;i'm the only cfs patient she has, so she's right...& she's waiting for some convincing empirical evidence about it. actually, klonipin is usually used as an anti-seizure med. more than you wanted to know, probably? sorry...i do go on & on &on hope it helps somehow. the great research doc i knewe in denver was nnamed james jones (not the Guyana nut-case, of course). he diagnosed me .

house mouse
Regular Member


Date Joined Dec 2005
Total Posts : 24
   Posted 2/25/2006 4:02 PM (GMT -7)   
Hi Ann and Artpainter,
really enjoyed your posts! I had a look at that article Ann and it explained so much. How is it we can have this illness for years and not really understand it? I guess it's the brain fog and just too sick sometimes to hunt down the info.

Painter I've been on clonazapam for 5 years now. .25mg 3 x a day ( I think that's what 1/2 a .5 mg tab is. ) I started on 4x 1/2 but slept all the time so cut it back to the 3. I take one in the am, afternoon and night. Just have to leave 4 hours between them. It has been just wonderful for me and I know it has made a difference. The anxiety and shaking attacks have gone and I sleep. I'm still in bed but my head is clearer and I can do more.

My daughter has just been to see a Dr and he has put her on it and some other meds. She is nearly 18 and is only to have it in the event of severe downs as he was concerned about the addictive side. But at least for her she now knows the deep dark days won't hopefully be as bad. We haven't actually needed to try her on a tab yet as she's gone onto Ritalin and that is helping her a bit.

All the best :)

artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 2/25/2006 5:29 PM (GMT -7)   
:-)  hi, hm...what do you want to be called? thanks very much for the reply;it really is amazing about what they do & don't know;most drs i have found won't try things unless they're proven;that only takes forever...if the FDAshortened the time between testing & manufacturing, ..and  aids people wouldn't have the cocktails available that they do& lives have been saved because of the shortened time;downside is the testing isn't long or thorough enough now ;they extended it to too many other drugs. several of the arthritis drugs that came out just a few yrs. ago has killed people, causing heart attacks & heart disease in people who were not at risk . i am afraid that's the tip of the iceberg. BUT i am extremely glad about the newest aids drugs;seems like it's always a trade-off. i'm so glad to hear that the clonazepam is helping you some.  what does your daughter have,hm? oh...it'weird to call you mouse OR house;is hm or HM ok? let me know , ok ? take good care & thanks a bunch for your input;i hope there's more input...& you are so right;when aren't we too fuzzy-headed(NOONE who doesn't have cfs can begin to understand THAT feeling, confusion, memory loss that comes & goes....esp. the weakness;i'm better today so I know this is too long...sorry. hugs & later.

obs ann
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Date Joined Jan 2006
Total Posts : 679
   Posted 2/25/2006 6:58 PM (GMT -7)   

Hia Mouse and artpainter,

good to see you Mouse :-) .  Sorry to be away from the CFS forum, but I think I told before how I stay away from this one and the Lyme one, because I don't feel I can do anything about those in my life and I like to get my mind off of them.

I'm sort of down today, so I thought I come see what artpainter had posted too.

An exceptional book would be by Katrina Bernes, a Dr. of Psychology who also has CFIDS/FMS and it's called "Running on Empty". 

She also believes the benzos do about 5 postitive things in CFS people.  1- help with the cognitive impairment. 2-pain management.  3-anxiety control  4-depression control. 5-sleep aid.

She specifically was addressing Xanax (alprazolam) in those 5, but that not very far from clonazepam.

Most CFIDS and Lyme Dr.s also use Neurontin/Gabapentin, which I'm also on at a low dose.

I take .5 alprazolam and 100 mg. gabapentin 2Xs a day, if needed but always at bedtime.  Like the Klonopin, the Gabapentin was an anti-seizure drug also ... but it works on the "gaba" in the brain, as you can see by the drug's name, and a shortage of "gaba" is what causes the anxiety in even healthy folks who only deal with anxiety.

The alprazolam is the only thing that stops my anxiety and the dreams from waking me up all night long.

I know they've helped with my cognitive too.  I only take enough to feel normal ... never buzzed or dopey.  Like Cheney said, if you're groggy or dopey, then the dose is too high.

There is plenty of science behind all of this, but the makers of anti-depressants compete with these anti-anxiety drugs.  Unfortunately.  Dr. Bernes is right in that xanax has helped with my 'new' depression that I never had before in my lifetime, due to what the Lyme is doing to my brain.

Anyhow ... On Andrew's thread, I think that was his name, grannycfs gave her web address, I'd recommend you send her a quick email to be placed on her newsletter list. It comes out once or twice a month, and some of the stuff is local to where she lives, but the rest is very informative.  She's a saint.   She's had CFS/CFIDS for over 20 years, so I don't recommend she be bogged with emails, but I can tell you she knows her stuff better than anyone I've met, about CFS/FMS.  She just doesn't have time to post because she's very bogged helping folks like us.

Well, artpainter ... don't feel bad about the lengths of your posts.  I beat ya there. :-)

And I can read for a bit, as long as I remember to blink.   Blink.

All the best to you Mouse and artpainter.

God Bless.

Ann


LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 2/25/2006 9:12 PM (GMT -7)   
tongue  hi, ann;thanks for the useful information. i didn't know that xanax is used as an anti-depressant. i was making an assumpption that was wrong. i thought anything like xanax, klonipin, valium were like a depressant, not an anti-depressant, but as i thinl of it, the benzos work primarily on the lymbic system in the brain...kind of an emotional seat in the brain...& i remembered reading that docs don't really know why or how it works to reduce anxiety ("they", i mean , not "it"...the benzodiazepines. After a surgery for crohns, i was on valium 5mg for a few months& it helped calm the intestine, but i seem to have an atypical response to benzos;they don't make me sleep, they keep me away;i react that way to things like benadryl, sudafed;my partner can take cold medicine for a cold & sleep & sleep...drives me nnuts;i get to stay awake & enjoy every second of of the cold! oh, well...fun, fun, fun :-) just gotta laugh at some of the stuff, better than losing your ming;& i already have agoraphobia & panic attacks sometimes, maybe a day to 3 or even 4, if i get super-lucky, the panics recede some;never all the way, but some...i actually got to go to a grocery store lst. month for an hr. for the first time since spring...it was great! i don't take the "normal" stuff for granted;i can't, i just hope people who move easily in the world & are healthy could appreciate it more instead of taking it for granted;but that's normal, iknow...anyway, annTHANKS AGAIN; i have so much to learn. yeah you just helped me a lot,   art later,gal

house mouse
Regular Member


Date Joined Dec 2005
Total Posts : 24
   Posted 2/27/2006 10:03 PM (GMT -7)   
Hi Ann,
so sorry you are having a down time. You're in my prayers. Hope that just knowing lots of people like us care makes a difference. Those dark times are horrible but hang in there as you know you'll come up again soon. Big hugs! You made me laugh with your "Blink".
I saw a snoopy cartoon and he was walking along and looked down and saw a tree lasso rope trap thing in front of him. He smiles cause he is so clever to have seen it, goes to step around it and a butterfly flys past. He looks at the butterfly, and next minute is hanging upside down in the tree. I thought that man knows about CFS and short attention spans!
Painter you can call me M if that is easier or whatever. I stopped being fussy a long time ago (lol).
Are you called painter because you like to paint?
My daughter is 17 -18 next month and has had CFIDS for 4 years now. We don't get out really (except for exciting things like Doctors visits) and so can appreciate your joy at going out. But I've got to say I know people who have got well from it and that always gives hope.
You must have been full of new sights to think on when you got home.
I found once when I went out again they'd built a whole new suburb!
Do you try the slow breathing? You probably do.
Hope you can get something to help. This is a mean thing isn't it. Well we care and know what you are struggling with to some extent and are all 100% behind you.
Hugs and God bless
M

obs ann
Veteran Member


Date Joined Jan 2006
Total Posts : 679
   Posted 3/2/2006 3:30 AM (GMT -7)   
Mouse, Please forgive me for forgeting this thread. Believe it or not, I'm trying to do two forums. I must be losing it to try that. I've got cognitive impairment and I struggle with remembering 'where' I posted on both forums.
I just read a post that says I wrote it yesterday ... but I don't remember doing it yesterday ... oh my.
Seemed like longer ago.

So please know that is not at all that I don't care. I just fell off here somewhere. I get on one board ... usually Anxiety board, and try to keep track there as best I can but still feel I've fallen behind when I was sick that week. But you hit it on the head with the "short attention spans". Oh Boy !

artpainter, I left you a post on one of your "no subject" threads. I've been wondering where you have disappeared to also. I did and then you did and I wouldn't blame Mouse if she did, because we're the most no-show people on this whole website.
Says a lot for CFS brains huh ?

Well, I pray you both are Fine and having fun rather than being stuck in a desk chair or doing what I'm doing ... trying to figure out where I posted last. Around and around I can go.

All the Best Mouse and artpainter and we'll cross paths again, I'm sure. If I go around in circles again a few more times, I'm sure I'll find your posts. (o: }

Love to you both.
Ann
LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 


house mouse
Regular Member


Date Joined Dec 2005
Total Posts : 24
   Posted 3/2/2006 5:12 PM (GMT -7)   
Hey Ann no problems with the time out.
That's the whole thing with this, we pop up and then we're down for the count, but at least we know it's nothing personal it's just the nature of this thing. Always nice to see your posts and have a catch up when we can.
I don't know what I did but don't get the notification thing anymore that tells me there is a reply. I'm not that computer savvy so don't know what to do about that. It may have happened because I logged in under Soph and now they go to her email address or something.
So like you it's a bit of hit and miss to find the posts.
I hope you are coming up again and feel better.
Painter, hope you are having an okay day and all of you out there in the cyber world with this. Hang on in there.
Hugs
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