Re: Valium (was: A question or 2)

[Guest guest]

Hi Barbara!

Congratulations on weaning yourself from valium! Hope you slept well last night

without it... That's huge! It must be such a relief, and I'm so happy for you!

Khaya

>

> hi jodie,

>

> was wondering where you were. haven't heard from you in a while.

>

> glad to hear you are making progress. how is wyatt?

>

> i will contact you about the b.w. formula.

>

> ohhhh!!! tonight will be my first night without any valium. i have

> tapered down to just a piece of a pill. have done better with it lately,

> so have made the tapers every week instead of every 2 wks. not

> anticipating any problems other than just some slight stuff. this last

> couple months i have improved in mental mood and physical ability.

> although, going so long without doing much, it is sometimes hard to get

> back into doing stuff. habits !! then there are the lyme 'stuff'.

>

> barbara

[Guest guest]

Barbara,

Sorry I dropped out on our previous conversation. Your last post (and all of

them before) gave me some very good information. I had meant to at least send a

thank you. It's been pretty rough lately getting the homeschooling going again

and all.

Anyway, I was wondering how much Valium you were on. I am on 7.5 mg 3xday, and

have been for years. I know by now my body has built enough tolerance that it

isn't helping anything. It's a left-over from a nightmare of a year full of

psychiatric medicines that I was put on by my not-so-Lyme literate LLMD. When

his protocol of a few months of oral antibiotics (and no mention of

co-infections) didn't make me better, then I must just need an anti-depressant

to get me kick-started again. When that didn't work, he added another and

another and another before dumping me off on a shrink who continued the pattern.

I finally made them stop almost everything. I've been thinking lately that I

would really like to try and wean off of the Valium, but, wow--I don't know if I

could handle adding in possible seizures and all on top of my current situation.

I'm barely surviving as it is.

Also, what herbs did you use? I use Valerian sometimes to help deal with what

the Valium is supposed to be doing--mostly just feeling overwhelmed (I call it

nervous-system-overload), though sometimes for shaking. If I'm desperate, I'll

sometimes take Benadryl, though that brings its own issues if taken often

enough. I have something homeopathic here for anxiety (prn usage), but I'm not

positive it really does anything.

I've done the anti-depressant withdrawal before--it's nasty, but short in

comparison. Maybe a month beginning to end. This sounds worse. Any suggestions

would be much appreciated. Thanks.

Congratulations on your successful battle with this and with the progress on the

babs. I hope you finally get relief from your air hunger, et al. (There are a

lot of people on here--as a reminder, I was the one who posted recently about

the air hunger and cravings for water. Mine has calmed down for the most part,

but I haven't coiled again yet because the first round of Essiac has been rough

on me. We'll see what comes with the next herx.)

Hope all are having better days.

Lorrie

> >>>

> >>> hi jodie,

> >>>

> >>> was wondering where you were.  haven't heard from you in a while.

> >>>

> >>> glad to hear you are making progress.  how is wyatt?

> >>>

> >>> i will contact you about the b.w. formula.

> >>>

> >>> ohhhh!!!  tonight will be my first night without any valium.  i have

> >>> tapered down to just a piece of a pill.  have done better with it lately,

> >>> so have made the tapers every week instead of every 2 wks.  not

> >>> anticipating any problems other than just some slight  stuff.  this last

> >>> couple months i have improved in mental mood and physical ability.

> >>>  although, going so long without doing much, it is sometimes hard to get

> >>> back into doing stuff. habits !!   then there are the lyme 'stuff'.

> >>>

> >>> barbara

> >>

> >> 

> >>   

> >> 

> >>

> > 

> >   

> >

> >

> >

>

[Guest guest]

Barbara,

Thank you so much. As I have said before, I have a tendency to just drop out

sometimes--I apologize. There are times when a simple reply is just too much to

deal with, especially since I'm a neuro Lymie with all of the usual brain fog,

etc. Sometimes it takes a very long time to put together a post.

One of the things I mentioned earlier was shaking. There are a few different

triggers that I have identified as causes for that, but occasionally I have

wondered if some of the shaking is related to w/d, since it sometimes hits when

it's been an unusually long time since my last dose. I am also on Oxycodone, but

I think it's the Valium that's causing it, if it is actually w/d. Weather

systems and hormones are two other triggers, and sometimes there seems to be

something in my sleep patterns that sets it off. I have actually woken up

because I was shaking so hard I could feel my body hitting against the mattress

(but not bouncing, just pressing down harder--hard to explain). It's not a

seizure. Every now and then I wake up and am shaking even harder, especially

when it's an alarm that wakes me as opposed to waking up by myself, but I can

usually fall right back to sleep for 5-10 minutes, and when I wake up again,

it's gone or much better.

They should really have to warn you when they put you on this stuff what it's

like when it's time to come off. " Don't stop taking this medicine suddenly "

doesn't cut it. I'm just glad that I set 7.5 as my personally-mandated limit.

When it stopped being effective, I refused to ask for a higher dose. I should

have done more research before starting it, but I was in a really bad place.

Thankfully I have strong religious beliefs that stopped me from hurting myself,

but I got to the place that I understand why people cut themselves or even kill

themselves. Physical pain would be preferable to the mental " pain " /anxiety going

on inside. And it feels like it will never end. But it did. When they took me

off the drugs that were causing it. When is the medical community going to

understand that we're sick, not crazy???

Anyway, I'm getting off-subject. Thanks again for the info. I'm sure I will be

seeking you out again. Please don't be offended if I don't answer for a while. I

read responses; I'm just not good at replying when I should. And I don't expect

people to remember me when I disappear on a regular basis, so never feel bad

about asking me to remind you who I am. There are a lot of us neuro Lymies here.

And a lot of people.

For what it's worth, I was researching something on here the other day and came

across some of your old posts. I'm not sure if you had started the benzo w/d at

that point or not, but you sound a lot better now than you did then. And I think

that others were telling you that you were sounding better to them at that time

than you had earlier. So you've seemingly made a lot of progress. Again, I say

congrats, and you give those of us starting the journey hope.

Hope all are seeing better days.

Lorrie

>

> > **

> >

> >

> > Barbara,

> >

> > Sorry I dropped out on our previous conversation. Your last post (and all

> > of them before) gave me some very good information. I had meant to at least

> > send a thank you. It's been pretty rough lately getting the homeschooling

> > going again and all.

> >

> > Anyway, I was wondering how much Valium you were on. I am on 7.5 mg 3xday,

> > and have been for years. I know by now my body has built enough tolerance

> > that it isn't helping anything. It's a left-over from a nightmare of a year

> > full of psychiatric medicines that I was put on by my not-so-Lyme literate

> > LLMD. When his protocol of a few months of oral antibiotics (and no mention

> > of co-infections) didn't make me better, then I must just need an

> > anti-depressant to get me kick-started again. When that didn't work, he

> > added another and another and another before dumping me off on a shrink who

> > continued the pattern. I finally made them stop almost everything. I've

> > been thinking lately that I would really like to try and wean off of the

> > Valium, but, wow--I don't know if I could handle adding in possible

> > seizures and all on top of my current situation. I'm barely surviving as it

> > is.

> >

> > Also, what herbs did you use? I use Valerian sometimes to help deal with

> > what the Valium is supposed to be doing--mostly just feeling overwhelmed (I

> > call it nervous-system-overload), though sometimes for shaking. If I'm

> > desperate, I'll sometimes take Benadryl, though that brings its own issues

> > if taken often enough. I have something homeopathic here for anxiety (prn

> > usage), but I'm not positive it really does anything.

> >

> > I've done the anti-depressant withdrawal before--it's nasty, but short in

> > comparison. Maybe a month beginning to end. This sounds worse. Any

> > suggestions would be much appreciated. Thanks.

> >

> > Congratulations on your successful battle with this and with the progress

> > on the babs. I hope you finally get relief from your air hunger, et al.

> > (There are a lot of people on here--as a reminder, I was the one who posted

> > recently about the air hunger and cravings for water. Mine has calmed down

> > for the most part, but I haven't coiled again yet because the first round

> > of Essiac has been rough on me. We'll see what comes with the next herx.)

> >

> > Hope all are having better days.

> >

> > Lorrie

[Guest guest]

,

Hi. If you have insurance, your md can order extensive blood tests for all of

your hormones. They're expensive, so I don't know how possible it would be if

you don't have insurance. He wouldn't have to use Lyme as a diagnosis. He could

just put fatigue, etc. I was fortunate to have a dr who had been through severe

hormone deficiencies herself, and knew what to look for.

It is very common for Lyme patients to have low hormone production. Personally,

I have several hormones that are very deficient, including some where numbers

that should be above 100 are in the teens. I was researching it at one point and

came across a dr who wrote that if she had a patient with significantly reduced

hormone levels involving several different hormones, she would test for Lyme.

So, very common in Lymies. And these are not just the hormones we normally think

of. There is a hormone called the " mother hormone " or even " grandmother hormone "

called Pregnenalone. (Can't guarantee I spelled that right.) It is key to normal

production of several other hormones, and one of the ones that is in the teens

for me personally.

I tried bio identical hormones, which are hormones that are synthesized in a lab

to be an exact match to the hormones your body produces. Synthetic versions of a

substance that is found in nature are not patentable. This contributes to the

controversy surrounding them and explains why they're not covered by insurance.

The controversy comes from two places--they're not patentable, so Big Pharma

doesn't mess with them and doesn't like it when people don't pay for their

versions instead, and, a more important controversy, whether or not they stop

your body from producing what it would naturally produce. This last part has to

do with age. If you are young enough that your body should be producing plenty

of this hormone itself--go carefully, and under the guidance of a qualified dr

using reliable testing. The body can't tell the difference between the bio

identical and the actual hormones produced by your body, so it will pull back on

its own production if it sees adequate hormone amounts in your body, forcing the

pills to do all the work. However, past a certain age, your body is not as

likely to be producing adequate levels anyway, even in a healthy patient.

However, the bio identicals made me a mess. I was more prone to crying spells,

etc., though there were other issues going on in my life that were possibly

contributing. (Husband out of town for a month, brother-in-law dying of cancer,

etc.) I just didn't feel like I was getting any benefit from the hormones, but I

was having possible side effects, so I stopped taking them. My dr uses them

though, and she is a bundle of energy, but she doesn't have Lyme. It makes a

huge difference.

A naturopath once told me that as I am treating the Lyme, my hormones will be

all over the place. I don't know that to be true. He had only dealt with 3 Lyme

patients before, and they are not well, maybe better, and don't even use him

anymore. He mostly works with cancer patients. So I don't use him anymore, and

don't know if what he said was true for Lyme patients or not. Rife was only a

small part of his treatment plan, and he didn't use a good machine. But it might

be worth further research.

I hope something here was helpful. It's good that you have a holistic md. He

will be able to order certain tests and things that a naturopath might not be

able to. Good luck, and I hope you get some answers.

Hope all are seeing better days.

Lorrie

> >

> > hi jodie,

> >

> > was wondering where you were. haven't heard from you in a while.

> >

> > glad to hear you are making progress. how is wyatt?

> >

> > i will contact you about the b.w. formula.

> >

> > ohhhh!!! tonight will be my first night without any valium. i have

> > tapered down to just a piece of a pill. have done better with it lately,

> > so have made the tapers every week instead of every 2 wks. not

> > anticipating any problems other than just some slight stuff. this last

> > couple months i have improved in mental mood and physical ability.

> > although, going so long without doing much, it is sometimes hard to get

> > back into doing stuff. habits !! then there are the lyme 'stuff'.

> >

> > barbara

>

[Guest guest]

Barbara,

I didn't know that legal marijuana can come in capsule form. I would love to be

able to try that for sleep. My state has recently become a medical marijuana

state, but it's very strict, only terminal illness etc. I don't think even with

all the physical & mental symptoms I have that my doctor would let me try it.

May I ask what is an m.j.patient? I have recently started using GABA in the

evening plus 2 homeopathic pills & they seem to help somewhat, but I still have

difficulty falling & staying asleep. Thanks for sharing.

Susie

> > > >

> > > > hi jodie,

> > > >

> > > > was wondering where you were. haven't heard from you in a while.

> > > >

> > > > glad to hear you are making progress. how is wyatt?

> > > >

> > > > i will contact you about the b.w. formula.

> > > >

> > > > ohhhh!!! tonight will be my first night without any valium. i have

> > > > tapered down to just a piece of a pill. have done better with it

> > lately,

> > > > so have made the tapers every week instead of every 2 wks. not

> > > > anticipating any problems other than just some slight stuff. this last

> > > > couple months i have improved in mental mood and physical ability.

> > > > although, going so long without doing much, it is sometimes hard to get

> > > > back into doing stuff. habits !! then there are the lyme 'stuff'.

> > > >

> > > > barbara

> > >

> >

> >

> >

> >

> >

>

[Guest guest]

What Marie said makes sense. If you research Pregnenolone and see just how many

hormones if affects, it may well be true that some of them would be bad for us

Lymies. I had a bad experience trying to supplement it, and seemingly I am not

alone.

In my opinion, is good to know which hormones you are deficient in if possible,

because it can help guide you with system support supplements (I don't know much

about these, as I'm still trying to get the basics of simple vitamin/mineral

supplementation for Lymies figured out and have no ND or LLMD to help). I'm glad

to see other posts showing at-home tests for adrenal fatigue, so as to avoid the

cost. I've never tried them personally.

And my experience is not to expect any help from an endocrinologist. I even went

to a special teaching hospital, well known in the US Southeast, about 2 hrs from

my house. He looked at my numbers, which were low, and basically (and rather

rudely) gave me the " why are you here? " treatment. I had gone there because the

local endocrinologist I went to pretty much acted the same way.

Hope all are seeing better days.

Lorrie

> > >

> > > hi jodie,

> > >

> > > was wondering where you were. haven't heard from you in a while.

> > >

> > > glad to hear you are making progress. how is wyatt?

> > >

> > > i will contact you about the b.w. formula.

> > >

> > > ohhhh!!! tonight will be my first night without any valium. i have

> > > tapered down to just a piece of a pill. have done better with it lately,

> > > so have made the tapers every week instead of every 2 wks. not

> > > anticipating any problems other than just some slight stuff. this last

> > > couple months i have improved in mental mood and physical ability.

> > > although, going so long without doing much, it is sometimes hard to get

> > > back into doing stuff. habits !! then there are the lyme 'stuff'.

> > >

> > > barbara

> >

>

[Guest guest]

Hi Barbara, I will respond after your questions in blue. First of all, let me say that I have already started reading the manual (but it may take me a while because of my short attention span). I am definitely planning to come off of the Valium, but especially after reading your post, it may have to wait a couple of months, since my husband may have an extended business trip coming up. There are places where I will question whether some of the symptoms are related to the Valium. I'm not in denial. I know this is bad stuff and that I very well may be in some of the stages of withdrawal, but some of the symptoms happen regardless of the amount of time it's been since my last dose, and others were happening at least occasionally before I started the Valium. That being said, the answers are below. >> hi lorrie,> > i've been rereading your last post to me. i'll comment after each> paragraph.> > >>>>One of the things I mentioned earlier was shaking. There are a few> different triggers that I have identified as causes for that, but> occasionally I have wondered if some of the shaking is related to w/d,> since it sometimes hits when it's been an unusually long time since my last> dose. I am also on Oxycodone, but I think it's the Valium that's causing> it, if it is actually w/d. Weather systems and hormones are two other> triggers, and sometimes there seems to be something in my sleep patterns> that sets it off. I have actually woken up because I was shaking so hard I> could feel my body hitting against the mattress (but not bouncing, just> pressing down harder--hard to explain). It's not a seizure. Every now and> then I wake up and am shaking even harder, especially when it's an alarm> that wakes me as opposed to waking up by myself, but I can usually fall> right back to sleep for 5-10 minutes, and when I wake up again, it's gone> or much better.>>>>>> > i am VERY concerned about the shaking. these are probably not seizures as> you say, but i believe they are convulsions, or at the very least, are on> their way to convulsions. the fact that your body is hitting against the> mattress is no where near normal and sounds like it is *becoming> dangerous.* and that they come when you are a while from your last> dose. It is not always related to the time since the last dose, but sometimes I think it is--it's nothing I can prove, but just sort of a feeling, like a thought tugging in the back of my mind. As I said, the shaking is also worse when weather fronts move through or at certain points in my hormone cycles. Also, if I'm off-schedule with my meds, it's usually because I've had an unusual day, like a trip to the dr office, which is too difficult for me to handle on my own at this time, especially when I'm herxing. So, a difficult event for my body, even though it sounds small. do you have> lots of restless leg shaking? No. shaking inside? Yes. legs, arms start shaking> then moves in the engulf the entire body? Not really. If I shake, it's usually either my arms or all over, but it doesn't seem to move from one place to another. EmergenC helps stops some of the body "jerks" I get while trying to sleep, so I think there may also be some electrolyte imbalances. > > lorrie, these episodes won't become less intense or less frequent, but> will become more intense and closer together if you don't increase the> dosages or go through a safe w/d. i am very worried about you.> > your sleep pattern is probably regulated by the drug, so it is setting them> off, not the sleep pattern itself.> > do you ever have trouble waking up in the morning, as if you are in a> stoupper? Yes. days when the mental fog is deeper and unable to communicate? Yes-ish. I have a hard time holding onto a thought, but able to talk and communicate, which pre-dates the Valium.> very extreme fatigue? Extreme fatigue pre-dates the Valium, as does the irritability and frustration. crying, teary eyed, weepy feeling? Some, again seemingly related to hormone cycles more than anything else. mornings when> you wake up feeling in 'terror', not just anxiety. No. legs, arms, tingling> and it moves towards your body, then numb feeling? No. mental pain? No. > overwhelmed having to 'think' or 'do' more than just one or a few things,> or figure things out? Yes. no coping ability? No. very irritable? wanting to> throw things from frustration? See above, though I keep the urge to throw things under control--kids at home help with that, needing to be an example and all, all of the time. feel like you don't know who you are> anymore? No. deep, within the brain anxiety, like you are going crazy? No.> feeling that you won't make it, or that you may die? Not unless I'm having symptoms that would warrant such thoughts--numbness on one side, etc. It doesn't happen often, but occasionally. feeling hopeless,> helpless overwhelmed? Overwhelmed, yes--but because I can't get my body to do all of the things I need it too--each new thing to do is a physical struggle that I often just can't win. obsessive thinking that just keeps cycling and won't> stop, especially when you go to bed and try to sleep?> Not obsessive cycling, but it is hard to settle down and go to bed sometimes. Usually I'm ok once I get there. > the oxycodone will add to the problem. you can't mix these strong drugs> safely.All of my doctors know every medicine that I'm on, including supplements, and I write down the time I take each medication so as to avoid accidental overdose. I read on the drug info sheets that both types of drugs are nervous-system depressants, so I understand the danger. Interestingly, no dr has ever mentioned it. And the Oxy comes from a pain clinic and the Valium from a psychiatrist. You would think they'd have said something. > > They should really have to warn you when they put you on this stuff what> it's like when it's time to come off. "Don't stop taking this medicine> suddenly" doesn't cut it. I'm just glad that I set 7.5 as my> personally-mandated limit. When it stopped being effective, I refused to> ask for a higher dose. I should have done more research before starting it,> but I was in a really bad place. Thankfully I have strong religious beliefs> that stopped me from hurting myself, but I got to the place that I> understand why people cut themselves or even kill themselves. Physical pain> would be preferable to the mental "pain"/anxiety going on inside. And it> feels like it will never end. But it did. When they took me off the drugs> that were causing it. When is the medical community going to understand> that we're sick, not crazy???> > i thought i read that you took 7.5 mg, 3x a day. did i misread that? that> would be 22.5 mg. 7.5 per dose. Yes--22.5 total. > > the fact that it stopped being effective tells you that the tolerance w/d> has begun.> We are starting our third year of homeschooling. I don't remember exactly when it was that my dose was increased to the 7.5 mg per dose, but I know it was before that. I've been on the same amount ever since.> like you, i have a *very strong faith* that has sustained me since i was 6> but it did not stop me from trying to harm myself a few days after the> acute w/d that ended in the e.r. when this drug w/d kicks in,* it is in> control of you*.* try as you may, it will control you*.> > about 2 days after the e.r. trip, while i was trying to get stabilized, my> husband left me for only a couple hours. i sat in the living room and> decided to throw things around (one of the acute side effects). made a> pretty good mess. then i went upstairs to take a bath. just wanted the> mental pain to stop (another acute side effect). didn't like the book i> tried to read. got out of the tub, took a couple 'pills' of something> (another acute side effect), then sat in the closet and tore the book up> (and another acute side effect). i passed out from the pills.> > my husband found me like that, carried me to the bed, where i went into> seizures again (another acute side effect). probably from the pills i had> taken in combinations with the instability of the klonipin. this all was> very much out of character for me. and i was never left a lone for many,> many months after that. even today my husband will call out to me when he> doesn't see me, just to make sure i'm ok. these drugs are not only not> fair to us, but to those who love us also.> I know how hard the last prescription-induced psychiatric nightmare was on both me and my family. I will admit to being afraid of going through anything like that again, but I hope and pray more than anything that I will be able to keep hold of myself enough that they won't have to go through what they did last time again. Based on what I've read so far, Valium is a longer-acting benzo, which is supposed to make the w/d easier than klonipan. Again, hoping and praying that will be the case. > most of the time, drs will increase the meds to stop the side effects of> the w/d tolerance. they just think (ignorantly?) that the original> problems is increasing and that you need more meds. i'm not sure if they> have bought into the drug co.'s propaganda, are stupid/ignorant, don't> care-as you take your problem and go away, but will come back for repeat> business, or all the above. not one dr in 4 warned me about any of this.> in fact, the one who helped me with a valium prescriptions, had no idea> this was a problem of the drug. a special kind of 'stupid'.> > For what it's worth, I was researching something on here the other day and> came across some of your old posts. I'm not sure if you had started the> benzo w/d at that point or not, but you sound a lot better now than you did> then. And I think that others were telling you that you were sounding> better to them at that time than you had earlier. So you've seemingly made> a lot of progress. Again, I say congrats, and you give those of us starting> the journey hope.> > i started the acute w/d in april of 2011, however, i started having days of> feeling like i was in a stoupper and *very *negative thinking clear back to> the early fall of 2010. i started 'losing' who i was within just 6 months> of being on the drug. within days of taking the drug i had a.m. pain in my> legs, waking up with feelings of 'terror' *every morning *until just a few> months ago.> > what is troublesome, is that because we are so sick we don't notice that it> is the drug's side effects and not the lyme. we think our lyme is getting> so much worse, *but * in fact, it is the drug. i thought i was getting so> much worse with the lyme. i now know, it is not the lyme that was getting> worse, but the drug. now, i can see that.> One of the major downturns in this battle with Lyme happened during that year I mentioned, and I have never been as well as I was at the beginning of that nightmare. I was on antibiotics just before it started, which may have contributed to that. But I also have been on the Valium since then. It would be wonderful if I kiss some of my symptoms away along with these pills.> lorrie, please take a look at the ashton manual and read the w/d symptoms.> see where you are in this drug w/d. she will also talk about the toxicity> of these drugs, part of the problem. please take care of yourself, for> you, as well as your family. they need you.> You mention toxicity (I know it has different meanings in medical world)--I had to stop this first round of Essiac early because it was causing terrible migraines (the worst I've had--and that's saying something). Based on my research and my craving levels, I'm almost positive it is killing off yeast. And it is most likely that my overall toxin load just got too high. I took a larger dose of binder, drank more water, and have given it a couple of days. It is letting up. The really bad migraines happened right after drinking the tea the last couple of times. The rest have been much milder, more like a herx for me. Is it possible that the Essiac would detox out something that I would need to be careful about in relation to the Valium? Or does toxicity here refer to the damage done to the brain? I didn't notice an increase in any psychiatric symptoms or shaking, and I need to stay on the tea as much as possible to help finally be rid of this yeast that has been plaguing me for a very long time. Thanks for everything. Hope you're doing well and getting better with each day free of the benzos. Hope all are seeing better days. Lorrie

[Guest guest]

Hi Barbara,

I didn't feel like you were saying I was in denial. I was just afraid that by

giving other reasons for the symptoms that you might think I was trying to talk

myself out of the importance of the situation, and by saying that I'm not in

denial, I was just trying to say that wasn't the case. Poor choice of words on

my part it seems. It certainly wouldn't be the first time someone tried to

convince themselves that they didn't have a problem, and you would certainly

have had reason to be concerned if that's what I was doing.

The morning stooper thing is definitely related to how tired I am. It's not

nearly as likely to happen if I've had a decent night's sleep. But it's when

I've had several nights in a row of being up quite late that I have the problem

waking up. (I have an extra-hard time going to bed when my husband's away--it

messes with my routine.) And then it's seemingly more normal things that happen,

like not remembering an alarm going off (I set several), or falling back to

sleep and dreaming that I had gotten up. Once I get up, I'm awake, certainly not

full of energy, but alert--not walking around dazed. Maybe I didn't understand

your question the first time.

It sounds as if you had problems from the time you went on the drugs. I was like

that with the Cymbalta, and that was the first of many drugs in that nightmare

year. I still don't know why the dr didn't catch what was happening. He saw me

one month after putting me on it and could see the anxiety that I didn't even

realize I had, which was when he added the second drug instead of taking me off

of the first. Both of our doctors should have taken us off of any med that

caused such negative effects. In my opinion, it's malpractice that they didn't,

though I'm not the type to sue. I have also questioned why I didn't catch it,

but I guess it was just messing with my head too bad for me to put it together.

I normally am careful to watch for any side effects, especially bad ones, and

demand to have changes made.

I am considering coming off of the Oxy first before starting to come off of the

Valium. I need to research this idea first, but the Oxy isn't helping much, if

any, anyway, and it seems to make sense that the fewer drugs I'm putting in my

body, the better it would be when it comes time to taper off the Valium. Plus,

I'm just generally annoyed with my pain clinic and ready to leave. I love my

nurse practitioner, but I am in at least as much pain, if not more, as when I

first started going there. And when I last asked about changes, they said the

next step would be a drug used for pain in the US, but is used as an

anti-depressant in Europe. I said no way. Plus, their billing department is

proving yet again that they can't count. I don't have the time or energy to deal

with this on a regular basis. And, like I said, I have a lot of research to do,

but I don't think it would take nearly as long to come off of the Oxy, and it

certainly doesn't sound like I should do both at the same time.

Anyway, I should be doing school stuff. (Grading is not my strong suit, and I'm

putting it off at the moment. ;o) ) Thanks again.

Hope all are seeing better days.

Lorrie

> > >

> > > hi lorrie,

> > >

> > > i've been rereading your last post to me. i'll comment after each

> > > paragraph.

> > >

> > > >>>>One of the things I mentioned earlier was shaking. There are a few

> > > different triggers that I have identified as causes for that, but

> > > occasionally I have wondered if some of the shaking is related to w/d,

> > > since it sometimes hits when it's been an unusually long time since my

> > last

> > > dose. I am also on Oxycodone, but I think it's the Valium that's causing

> > > it, if it is actually w/d. Weather systems and hormones are two other

> > > triggers, and sometimes there seems to be something in my sleep patterns

> > > that sets it off. I have actually woken up because I was shaking so hard

> > I

> > > could feel my body hitting against the mattress (but not bouncing, just

> > > pressing down harder--hard to explain). It's not a seizure. Every now and

> > > then I wake up and am shaking even harder, especially when it's an alarm

> > > that wakes me as opposed to waking up by myself, but I can usually fall

> > > right back to sleep for 5-10 minutes, and when I wake up again, it's gone

> > > or much better.>>>>>

> > >

> > > i am VERY concerned about the shaking. these are probably not seizures as

> > > you say, but i believe they are convulsions, or at the very least, are on

> > > their way to convulsions. the fact that your body is hitting against the

> > > mattress is no where near normal and sounds like it is *becoming

> > > dangerous.* and that they come when you are a while from your last

> > > dose. It is not always related to the time since the last dose, but

> > sometimes I think it is--it's nothing I can prove, but just sort of a

> > feeling, like a thought tugging in the back of my mind. As I said, the

> > shaking is also worse when weather fronts move through or at certain points

> > in my hormone cycles. Also, if I'm off-schedule with my meds, it's usually

> > because I've had an unusual day, like a trip to the dr office, which is too

> > difficult for me to handle on my own at this time, especially when I'm

> > herxing. So, a difficult event for my body, even though it sounds small.

do

> > you have

> > > lots of restless leg shaking? No. shaking inside? Yes. legs, arms

> > start shaking

> > > then moves in the engulf the entire body? Not really. If I shake, it's

> > usually either my arms or all over, but it doesn't seem to move from one

> > place to another. EmergenC helps stops some of the body " jerks " I get while

> > trying to sleep, so I think there may also be some electrolyte imbalances.

> >

> > >

> > > lorrie, these episodes won't become less intense or less frequent, but

> > > will become more intense and closer together if you don't increase the

> > > dosages or go through a safe w/d. i am very worried about you.

> > >

> > > your sleep pattern is probably regulated by the drug, so it is setting

> > them

> > > off, not the sleep pattern itself.

> > >

> > > do you ever have trouble waking up in the morning, as if you are in a

> > > stoupper? Yes. days when the mental fog is deeper and unable to

> > communicate? Yes-ish. I have a hard time holding onto a thought, but

> > able to talk and communicate, which pre-dates the Valium.

> > > very extreme fatigue? Extreme fatigue pre-dates the Valium, as does the

> > irritability and frustration. crying, teary eyed, weepy feeling? Some,

> > again seemingly related to hormone cycles more than anything else.

> > mornings when

> > > you wake up feeling in 'terror', not just anxiety. No. legs, arms,

> > tingling

> > > and it moves towards your body, then numb feeling? No. mental pain?

> > No.

> > > overwhelmed having to 'think' or 'do' more than just one or a few things,

> > > or figure things out? Yes. no coping ability? No. very irritable?

> > wanting to

> > > throw things from frustration? See above, though I keep the urge to

> > throw things under control--kids at home help with that, needing to be an

> > example and all, all of the time. feel like you don't know who you are

> > > anymore? No. deep, within the brain anxiety, like you are going crazy?

> > No.

> > > feeling that you won't make it, or that you may die? Not unless I'm

> > having symptoms that would warrant such thoughts--numbness on one side,

> > etc. It doesn't happen often, but occasionally. feeling hopeless,

> > > helpless overwhelmed? Overwhelmed, yes--but because I can't get my

> > body to do all of the things I need it too--each new thing to do is a

> > physical struggle that I often just can't win. obsessive thinking that

> > just keeps cycling and won't

> > > stop, especially when you go to bed and try to sleep?

> > > Not obsessive cycling, but it is hard to settle down and go to

> > bed sometimes. Usually I'm ok once I get there.

> >

> > > the oxycodone will add to the problem. you can't mix these strong drugs

> > > safely.

> >

> > All of my doctors know every medicine that I'm on, including supplements,

> > and I write down the time I take each medication so as to avoid accidental

> > overdose. I read on the drug info sheets that both types of drugs are

> > nervous-system depressants, so I understand the danger. Interestingly, no

> > dr has ever mentioned it. And the Oxy comes from a pain clinic and the

> > Valium from a psychiatrist. You would think they'd have said something.

> >

> > >

> > > They should really have to warn you when they put you on this stuff what

> > > it's like when it's time to come off. " Don't stop taking this medicine

> > > suddenly " doesn't cut it. I'm just glad that I set 7.5 as my

> > > personally-mandated limit. When it stopped being effective, I refused to

> > > ask for a higher dose. I should have done more research before starting

> > it,

> > > but I was in a really bad place. Thankfully I have strong religious

> > beliefs

> > > that stopped me from hurting myself, but I got to the place that I

> > > understand why people cut themselves or even kill themselves. Physical

> > pain

> > > would be preferable to the mental " pain " /anxiety going on inside. And it

> > > feels like it will never end. But it did. When they took me off the drugs

> > > that were causing it. When is the medical community going to understand

> > > that we're sick, not crazy???

> > >

> > > i thought i read that you took 7.5 mg, 3x a day. did i misread that? that

> > > would be 22.5 mg. 7.5 per dose. Yes--22.5 total.

> >

> > >

> > > the fact that it stopped being effective tells you that the tolerance w/d

> > > has begun.

> > >

> > We are starting our third year of homeschooling. I don't remember exactly

> > when it was that my dose was increased to the 7.5 mg per dose, but I know

> > it was before that. I've been on the same amount ever since.

> >

> > > like you, i have a *very strong faith* that has sustained me since i was

> > 6

> >

> > > but it did not stop me from trying to harm myself a few days after the

> > > acute w/d that ended in the e.r. when this drug w/d kicks in,* it is in

> > > control of you*.* try as you may, it will control you*.

> >

> > >

> > > about 2 days after the e.r. trip, while i was trying to get stabilized,

> > my

> > > husband left me for only a couple hours. i sat in the living room and

> > > decided to throw things around (one of the acute side effects). made a

> > > pretty good mess. then i went upstairs to take a bath. just wanted the

> > > mental pain to stop (another acute side effect). didn't like the book i

> > > tried to read. got out of the tub, took a couple 'pills' of something

> > > (another acute side effect), then sat in the closet and tore the book up

> > > (and another acute side effect). i passed out from the pills.

> > >

> > > my husband found me like that, carried me to the bed, where i went into

> > > seizures again (another acute side effect). probably from the pills i had

> > > taken in combinations with the instability of the klonipin. this all was

> > > very much out of character for me. and i was never left a lone for many,

> > > many months after that. even today my husband will call out to me when he

> > > doesn't see me, just to make sure i'm ok. these drugs are not only not

> > > fair to us, but to those who love us also.

> > >

> > I know how hard the last prescription-induced psychiatric nightmare was

> > on both me and my family. I will admit to being afraid of going through

> > anything like that again, but I hope and pray more than anything that I

> > will be able to keep hold of myself enough that they won't have to go

> > through what they did last time again. Based on what I've read so far,

> > Valium is a longer-acting benzo, which is supposed to make the w/d easier

> > than klonipan. Again, hoping and praying that will be the case.

> >

> > > most of the time, drs will increase the meds to stop the side effects of

> > > the w/d tolerance. they just think (ignorantly?) that the original

> > > problems is increasing and that you need more meds. i'm not sure if they

> > > have bought into the drug co.'s propaganda, are stupid/ignorant, don't

> > > care-as you take your problem and go away, but will come back for repeat

> > > business, or all the above. not one dr in 4 warned me about any of this.

> > > in fact, the one who helped me with a valium prescriptions, had no idea

> > > this was a problem of the drug. a special kind of 'stupid'.

> > >

> > > For what it's worth, I was researching something on here the other day

> > and

> > > came across some of your old posts. I'm not sure if you had started the

> > > benzo w/d at that point or not, but you sound a lot better now than you

> > did

> > > then. And I think that others were telling you that you were sounding

> > > better to them at that time than you had earlier. So you've seemingly

> > made

> > > a lot of progress. Again, I say congrats, and you give those of us

> > starting

> > > the journey hope.

> > >

> > > i started the acute w/d in april of 2011, however, i started having days

> > of

> > > feeling like i was in a stoupper and *very *negative thinking clear back

> > to

> >

> > > the early fall of 2010. i started 'losing' who i was within just 6 months

> > > of being on the drug. within days of taking the drug i had a.m. pain in

> > my

> > > legs, waking up with feelings of 'terror' *every morning *until just a

> > few

> >

> > > months ago.

> > >

> > > what is troublesome, is that because we are so sick we don't notice that

> > it

> > > is the drug's side effects and not the lyme. we think our lyme is getting

> > > so much worse, *but * in fact, it is the drug. i thought i was getting so

> >

> > > much worse with the lyme. i now know, it is not the lyme that was getting

> > > worse, but the drug. now, i can see that.

> > >

> > One of the major downturns in this battle with Lyme happened during that

> > year I mentioned, and I have never been as well as I was at the beginning

> > of that nightmare. I was on antibiotics just before it started, which may

> > have contributed to that. But I also have been on the Valium since then. It

> > would be wonderful if I kiss some of my symptoms away along with these

> > pills.

> >

> > > lorrie, please take a look at the ashton manual and read the w/d

> > symptoms.

> > > see where you are in this drug w/d. she will also talk about the toxicity

> > > of these drugs, part of the problem. please take care of yourself, for

> > > you, as well as your family. they need you.

> > >

> > You mention toxicity (I know it has different meanings in medical

> > world)--I had to stop this first round of Essiac early because it was

> > causing terrible migraines (the worst I've had--and that's saying

> > something). Based on my research and my craving levels, I'm almost positive

> > it is killing off yeast. And it is most likely that my overall toxin load

> > just got too high. I took a larger dose of binder, drank more water, and

> > have given it a couple of days. It is letting up. The really bad migraines

> > happened right after drinking the tea the last couple of times. The rest

> > have been much milder, more like a herx for me. Is it possible that the

> > Essiac would detox out something that I would need to be careful about in

> > relation to the Valium? Or does toxicity here refer to the damage done to

> > the brain? I didn't notice an increase in any psychiatric symptoms or

> > shaking, and I need to stay on the tea as much as possible to help finally

> > be rid of this yeast that has been plaguing me for a very long time.

> >

> > Thanks for everything. Hope you're doing well and getting better with each

> > day free of the benzos.

> >

> > Hope all are seeing better days.

> >

> > Lorrie

> >

> >

> >

> >

>