Valium/Diazepam Support Group

[[be...]]

Moo, moo my Moodle:

I was hoping for a reply from you, but I guess yesterday was a played out day for you. I am just wondering how you are feeling today. Did you get a good night's rest? How are you feeling now, my dear? I hope better. If so, then you can make the plane trip. I know how tedious such a long trip can be, so hopefully you can get some sleep during the trip. I like to charge up my Smartphone with about 300 of my favorite songs, just to pass the time. Too bad you can't take advantage of the cocktail cart. Just know that I am thinking about you and hopefully, I will hear from you before you leave. Just know that I said several prayers or you last night......Thinking of you.... :smitten:

 

Hi Marian:

 

Well, that's good news that you told us what the Dr. said. I suspected as much, tho I thought he might have an answer about your fever. You don't not want to have one through your entire taper. I'm glad he's making the C/O in steps, like I suggested earlier. Oh, don't worry if you think you sounded like a neurotic. I am sure he just felt you were frantic. I also assume he has seen patients over the years that behaved very strangely. That's the nature of this beast. It make you from a person to a non person. I know sometimes I can act pretty weird at my own pdoc's visits. It's the racing mind that makes me switch from topic to topic all of the time, like I am in a darn rush to get everything out in the open at the same time. It doesn't bother him at all. Sometimes I just can't stop from speaking. Once I asked him why he didn't talk to me much, and he said it's because I talk enough for the both of us. I hope your PCP can help you. About the records, in some states all records automatically are sent to a central computer so if your name pops up, your records will be there. OTOH, in other states, this does not happen. For instance, when I moved from Ohio back to CT, no previous records ever appeared. My pdoc wasn't interested in them anyway. But when I see my PCP, they already know of all of the medications I have been taken. Must be a pharmacy thing. Anyway, what would Dr. Madill's receptionist know about benzos? I think everyone here knows the right conversation rate, and so does Dr. Madill. He's the only one that matters, not his aides. I think 3 emails are enough for right now. He might not even be in his office today, as I know many people, like my brother, take the day off before the 4th of July. So I would just stick with his plan and hope the emails are returned. Maybe not today, but by next week for sure. But remember, it will take time for your body to stabilize, so you have to be patient. Once you become this way, then I'm sure Madill told you how to taper off them. I am just wondering if he suggested a micro taper? Take care sweetie. You are in my heart and thoughts. You will get through this, I promise.....

 

I hope every V-er here has a great holiday weekend!!!!

Bets

[[Mo...]]

Bets and everyone I may have to have fever through the whole taper if I can't find the source. It scares me.

I really screwed up badly. I feel nothing but extreme rage and agitation from benzos. I don't know how to deal with it. Staying on .25 K with 5 mg. V for 2 weeks is possibly going to prove too much for me. I wish it didn't have to be that long. I  hope this rage settles. I was on K for 4 days (.05 2x day, lower than ever to equal what I tapered down to with V) straight from being stable on V.

 

Please talk to me today guys before I punch myself or somebody into a pulp.

 

Last night I started the .25 k with the 5 mg V. Now I have awakened (way too early around 4) with severe rage, etc.

Any advice? Will it go away? I wish I didn't have to keep any k on board for two weeks and now I am unstable on V.

 

As for the fever it remains a frightening mystery. I asked Dr. Madill if hypothetically,  (even though he doesn't believe fever is from the V) that if the V was causing the fever would it be safe to taper it with the fever. He said yes.

Geez. I don't know.

 

Moo how are you feeling? Have you flown back yet?

 

River please tell me your thoughts. I can't keep calling or emailing Dr. Madill unless I want to spend a ton more money. Can't.

 

 

 

[[Mo...]]

Bets, I'm sorry I haven't replied.

I feel sick and whatever this all is ,is making me feel like I just halved my dose. It's like I'm not there. Like dizzy but not spinning, as if there isn't anything but clouds in my head. And I feel like I have to lay down each time I get up.

I'm floaty, dizzy and I'm worried for tomorrow . Not sure if I can go like this.. :'(

 

Sorry , no better news. I'm going back to bed.

And I wish you all a much better day. Thank you for being there yesterday.

 

Trying positive thoughts, that it'll all work out, pep talking myself that it'll be ok.

 

[[Mo...]]

Moo oh your flight is tomorrow.  Sorry got mixed up. I am sorry you feel so lousy. That's awful. Take good care today. I hope you are better by then.

 

Hugs,

 

Mo

[[Te...]]

Bets,

Thank you for you caring post, you are a person that give advice and love,  but few times you write how are you feeling, most of Us are whining and asking for help, I'm the one that come to BB when I'm in trouble,  I would like to know how are you doing? 

what  is going  on with your Taper?    I hope the best for you.  and keep with the great work of given Us Love.

 

 

Mozart,

My mom used to say that the fever is symptom of infection, the body is fighting the virus, she said that the only problem with the fever is that can affect meninges,  she put cold  compression wraps on the  head, to prevent meningitis.  she barely used antibiotics, only when the fewer was with stomach pain. 

 

Let your body heal Itself,  IMO  Valium is not causing the fever. 

 

I hope you will feel better soon.

 

Tex

 

   

[[Mo...]]

Everyone

 

I am freezing too half the time. I don't want menengitis. G-d forbid. 100.2 fever so far today. No one can help me due to him dismissing me. Holiday weekend. Very scared. He should have tested for parasites, viruses, fungi. He only saw tests my GP did only for bacteria. There is OBVIOUSLY something wrong.

 

All my chances are ruined. The infectious disease doctor who dismissed me put a lot of crap in his notes and now no othe idd will see me. It was my one chance that got ruined just because I told him I suspected Valium, changed meds,was going tthrough w/d and have PTSD. I also just saw that the other PCP I will see today won't be able to refer me to the other idd in town because I read he is not taking new patients.

 

My chances are gone. This guy made an idiot out of me. I will not find the fever's source. And there IS something wrong.

 

Devastating.

 

Tex, I don't want meningitis.  G-d forbid. I have never had a fever lasting over 6 weeks like this. Never heard of this.

[[Sn...]]

Dearest moo,

 

I've been thinking about you all day. I hope you're somewhere comfy, resting. I hope you feel ALL BETTER soon!!

 

Love,

 

Snow

[[be...]]

Aaaw geez Tex:

 

Thank you for being so kind and sweet. I'm glad I have not be kicked off here. The reason I don't complain much is because of guilt. Pure guilt. I see so many people here suffering badly (like both Mo's) and I really don't have anything much to complain about. I really should, as this is my 3rd go-around with this garbage. Plus a high dose for an extended period of time should make me a primate candidate. I realized I long built tolerance to K many moons ago. I know this because once my new pdoc saw that I was on a very dangerous drug~~Clozaril~~he did a rapid withdrawal and then my insomnia began. That nasty drug made me sleep about 16 hours a day. Then little sleep. So I said to him, I want to go super slowly off my K. So I did. He had no issue with that. I managed the insomnia OK and then as I lowered my dose of K, my sleep has gotten a whole lot better. Then I hit the wall from cut and hold from 10 mg down to just .625 mg and got the benzo flu. Then I began a dry micro taper and it has been going super well. I only have a bout of fatigue here and there and that's it. But now that I am down to the dredges of my K, I will soon hit acute and also begin the taper off Valium. I suspect you will hear from me loud and clear then. I just don't worry about what the future will bode for me. What will happen, will happen. I'm sure at some point I will wish I was dead. Having a strong faith and the help of you guys, my pdoc and friends, have gotten me to this point. Family: bleh. Often someone will ask me how I managed to get down from 10 mg to now about .35 mg, I just say, I don't know. Cause I don't. I try and spend my time helping people and giving support, in and out of BB. My turn will come, I assure you of this. :smitten:  Isn't that a boring story?

 

Mozart: Ok. I know you are in need of support here and I am super glad you told us all about your phone call. I suspected he would tell you to C/O back to Valium, as I recall earlier on that River said he just does V tapers. I always remember when it is River speaking because that happens to be the name of my favorite song. So, OK. You do this. The man knows from where he speaks. But again, don't expect any miracles overnight. Your body has been through a lot, my friend, so it needs time to recover. I know you feel isolated, hurt, in pain, the whole ball of wax and I wish I lived in Oregon to give you a personal  But alas, I live 3,000 miles from you. I am quite curious about your appointment with the IDD. It seemed to have gone very badly. Did you go crazy on him? Or did he just dismiss you like so many other health care professionals who don't have a clue about benzos? I don't know what insurance you have, but with mine I don't need a referral of any sort. I just go where I please and see whomever I want to see. If some doctor asks me who referred him, I just say nobody. I picked you on my own. And that's that.

 

I don't know what to tell you about your fever, but I am pretty confident you will not get Meningitis!! You would already have it by now. You are scaring yourself. Yes, you will recover. It may not be pleasant, but it will happen. You have to believe that. The mind is a very scary thing. It can for for you, or work against you. It's up to you what path you want to take. I just try and be very optimistic. I am generally a happy go lucky person and my way of lessening my troubles is by joking around. I can't tell you how many HS classes I got kicked out of for spewing out too many jokes. The Dean if Discipline became my 2nd father.

 

After 39 years of this plus your current condition it's no wonder that you have rage. I would think you were mentally sick otherwise. This can be a good thing, within limits. We don't want you shooting up classrooms. It means that your emotions are returning, and that means healing. I never had a bout of rage, but I did have hostility for a while. I wrote a very long email bashing my original provider for putting me on so much K. But like always, I don't just dash it off, but wait for a few days to calm down. Then I change it to be less harsh. Instead of bashing her (as I knew she meant well and really cared for me), I explained that a C/T is bad news, so is a large dose for a long period of time and told her what my pdoc is doing and he is doing it so well. Then I attach two documents for her to read. One is always a copy of the Manual. Now she is also a neurologist as well as a psych at Cleveland Clinic so she better know by now. I always trust my gut. So if you say you are sick, then you are sick. But what to do what to do about that fever? Well, I just don't know. If it were me, I would see another IDD from another practice. I know you say this is impossible but are you willing to travel to a big city and see one without a referral? Can this be done and just pretend you haven't already seen one? My brain is too tied up because I can't give you an answer. But if Dr. Madill says you can do it with a low grade fever, I would trust him. I would get the old fashioned thermometers and ditch the ear one. I really feel for ya, hon.

 

Hey my moo my moo my moodle my noodle.

 

I'm so sorry that you seem to be feeling even worse. Like cutting by 50%? That's bad......Do you think perhaps you've hit that invisible wall? You are down to less than 1 mg, so it wouldn't surprise me. Is there any chance you can postpone your trip until you feel better? I hope so. I think you can cancel and just pay another $50 when you are ready to go. You still have some hours, and I sure hope you are sleeping, to regain your strength. I be giving you a pep talk to myself about you as well. Well, what a way to spend the 4th of July. :'( :'( I'll be thinking of you. You know I care deeply, righto?

Bets

[[Mo...]]

Noodle my noodle my moodle...? bets, you just managed to make me smile.

 

No I can't postpone my trip. That's the shit part .

I am going to have to be on that flight if it takes every last bit out of me.

Kind of going in and out of burning up and feeling kind of not so nutso.

Kind of not so nutso would be pretty creaking awesome right now, as a baseline.

 

Thanks , bets.

 

Well all be here while you taper, don't forget. Don't expect the worst, okay?

There is no need for guilt what so ever. It ain't fun for anyone, regardless of their xs intensity.

I'm just glad you're not feeling too bad right now.

 

 

[[Mo...]]

Have to let you all know. I HAVE to go straight back to V. The crossing back after only 4 days on k (which was a mistake I only did because I was afraid v was causing fever ) is killing me too muchm I have to go back on ten mg v twice a day NOW and finish the taper even with fever

[[or...]]

Bets, about this:

 

I just don't worry about what the future will bode for me. What will happen, will happen. I'm sure at some point I will wish I was dead. Having a strong faith and the help of you guys, my pdoc and friends, have gotten me to this point

 

Yeah, best not to worry about it too much.

 

You tapered K, and from what I have heard from K and V taperers, V is not nearly the beast that K is.

 

You had Builder "coach" you on how to proceed . . . you've got a game plan . . . so things may not get too bad. And if they do, as Mood says, we'll be here. 

 

Okatz

[[Mo...]]

Have to let you all know. I HAVE to go straight back to V. The crossing back after only 4 days on k (which was a mistake I only did because I was afraid v was causing fever ) is killing me too muchm I have to go back on ten mg v twice a day NOW and finish the taper even with fever

 

Yes, we know.

Now that you know that V isn't causing the fever, stick with it. Ride it out?

And yes, whatever xs come up, we got to taper through them and meanwhile see a doctor again if you don't trust it. I peronsally tend to think its the stress, panic and worries, mostly , that land you in this state of feeling so awful. Especially since doctors have checked your blood work, and you've had stuff sorted out. Didn't you have an appointment with the endodontist too?

Sounds to me you're ruling everything out that you can.

 

 

I wish I could do or say anything else, had any solution...  I have read your posts, your symptoms and I don't know what else to advice or say, to be honest, except to try and distract yourself from what you're feeling.

 

[[Al...]]

Moo,

 

Your advise to Mo sounds exactly what I would say. It is an easy trap to get obsessive about health. I know when I was trying to get off A I was shire I had all sorts of diseases and health issues. I was obsessing about every little thing I was feeling.

Once you start looking inside you notice all sorts of sensations that we don't normally feel. In my case even my normal body processes of digesting food, to me in the state I was in felt like something was very wrong going in there.

 

Distraction and acceptance, that's the ticket. I believe that this taper thing can cause all sorts of distressing sensations and they can be scary. But we have to rise above it and go through to the other side and believe in the healing that is taking place.

 

You are such a trooper giving compassionate advise when you yourself are feeling so bad. I'm calling St. Moo from now on.

 

Have a great trip tomorrow and if you get a chance let us know how you are once your settled at home in NL.

 

Much love:

 

 

ATU

[[Mo...]]

Moo,

 

Your advise to Mo sounds exactly what I would say. It is an easy trap to get obsessive about health. I know when I was trying to get off A I was shire I had all sorts of diseases and health issues. I was obsessing about every little thing I was feeling.

Once you start looking inside you notice all sorts of sensations that we don't normally feel. In my case even my normal body processes of digesting food, to me in the state I was in felt like something was very wrong going in there.

 

Distraction and acceptance, that's the ticket. I believe that this taper thing can cause all sorts of distressing sensations and they can be scary. But we have to rise above it and go through to the other side and believe in the healing that is taking place.

 

You are such a trooper giving compassionate advise when you yourself are feeling so bad. I'm calling St. Moo from now on.

 

Have a great trip tomorrow and if you get a chance let us know how you are once your settled at home in NL.

 

Much love:

 

 

ATU

 

Oh you!

Knock it off.

 

I'm doing anything I can do distract myself and get thought the day, watch tv, read here, etc.  knock myself out for the night.

Have to get up at 4:30. Happy shakes....

 

I'll,post when I get there if I can. And from what I can tell there is wifi on the flight. If so, I'll post a picture of when I fly over your house.

[[Al...]]

Moo,

 

Your advise to Mo sounds exactly what I would say. It is an easy trap to get obsessive about health. I know when I was trying to get off A I was shire I had all sorts of diseases and health issues. I was obsessing about every little thing I was feeling.

Once you start looking inside you notice all sorts of sensations that we don't normally feel. In my case even my normal body processes of digesting food, to me in the state I was in felt like something was very wrong going in there.

 

Distraction and acceptance, that's the ticket. I believe that this taper thing can cause all sorts of distressing sensations and they can be scary. But we have to rise above it and go through to the other side and believe in the healing that is taking place.

 

You are such a trooper giving compassionate advise when you yourself are feeling so bad. I'm calling St. Moo from now on.

 

Have a great trip tomorrow and if you get a chance let us know how you are once your settled at home in NL.

 

Much love:

 

 

ATU

 

Oh you!

Knock it off.

 

I'm doing anything I can do distract myself and get thought the day, watch tv, read here, etc.  knock myself out for the night.

Have to get up at 4:30. Happy shakes....

 

I'll,post when I get there if I can. And from what I can tell there is wifi on the flight. If so, I'll post a picture of when I fly over your house.

 

Moo,

 

When you pass over Canada, I'll be the one standing on his roof waving his arms.! 

 

Hugs:

 

ATU

[[Mo...]]

Moo,

 

Your advise to Mo sounds exactly what I would say. It is an easy trap to get obsessive about health. I know when I was trying to get off A I was shire I had all sorts of diseases and health issues. I was obsessing about every little thing I was feeling.

Once you start looking inside you notice all sorts of sensations that we don't normally feel. In my case even my normal body processes of digesting food, to me in the state I was in felt like something was very wrong going in there.

 

Distraction and acceptance, that's the ticket. I believe that this taper thing can cause all sorts of distressing sensations and they can be scary. But we have to rise above it and go through to the other side and believe in the healing that is taking place.

 

You are such a trooper giving compassionate advise when you yourself are feeling so bad. I'm calling St. Moo from now on.

 

Have a great trip tomorrow and if you get a chance let us know how you are once your settled at home in NL.

 

Much love:

 

 

ATU

 

Oh you!

Knock it off.

 

I'm doing anything I can do distract myself and get thought the day, watch tv, read here, etc.  knock myself out for the night.

Have to get up at 4:30. Happy shakes....

 

I'll,post when I get there if I can. And from what I can tell there is wifi on the flight. If so, I'll post a picture of when I fly over your house.

 

Moo,

 

When you pass over Canada, I'll be the one standing on his roof waving his arms.! 

 

Hugs:

 

ATU

 

If it was a direct flight, I'd actually fly over Canada . I never get that.

I'll message you when I get close. Wear something fluorescent .

[[Mo...]]

Bets and everyone Anyone would freak out if they had a flu and fever lasting over 6 weeks. It's insane. Bets I can self-refer yes. But instead today I saw a former PCP and she was worried. I wanted her to pursue things the way the IDD did not so I lied to her about everything. About what he did, oh and yes Bets he dismissed me the minute I told him I was worried fever was from valium and that I was w/d and PTSD. If I hadn't mentioned those things he would have pursued  more testing as he should have. He chalked it up to med changes and never did a test. Today the PCP was worried and did a lot of tests that should have been done. But the huge problem is that I lied to her about everything. I did not tell her I saw anyone or had any tests. Now if I need to be referred to an IDD when the blood and other cultures come back Tuesday I have to go to that group. I have to come clean with her on Tuesday and tell her I lied to her.i am afraid to lose her. I needed to keep trying to find the source of this awful flu fever thing. I can only pray she will forgive me. Remember Bets I can't travel. Too much agoraphobia bedridden and too sick to travel. I have to , after she gives me test results, tell her what the IDD did to me and that I lied to her. This is a terrible mess.

 

On another note I need to go straight back to V TONIGHT.  On the K  it was just 4 days. Please G-d I cannot handle mixing them for two weeks. Why 2 weeks from having done it for 4 days not sure but I can't. Believe me I know hth aging done those 4 days really screwed me up but I cannot tolerate the mix and have to get the K OUTTA me. Please someone ok this.

 

I need to do this tonight. I don't want to mess up my CMS so much but I need this V back. I still worry about V causing fever but I guess I have to taper for a year WITH fever if that is the case which would be horrible.  Please tell me your thoughts on all of this and please be kind and gentle as  .  I am in a very bad PTSD state. Thank you guys.

 

Moo I hope you will have a good trip and hope you feel better.

 

Mo

Please another thing. Did you guys tell me I can go straight back to V after 4 days of straight K then 2 doses of mixingthem? I am PRAYING that is ok to do. The mixture trying to c/o is KILLING ME. Bets I get benzo rage. IIt's horrific. I need to go back to just V tonight. I want to REstabilize on it and stick with only V. I know I disrupted my taper

[[be...]]

Hey ogee gogee Katzie (Or should I say Dr. Katz?  )

 

I just wrote this long post and it went into cyberspace. Now I may have a moment of hostility. First off, I want to thank you for that pep talk. You are so kind. Yes, I can't thank builder enough for answering my numerus stupid questions. It has gotten me on the right path. I did feel better this week when I visited my very benzo wise pdoc. He has tapered well over 300 patients off benzos. I asked him when the shoe will drop for me. And this was his response. "Bets, I expected you to be in bed about eight months ago. But you have come so far with very little trouble. A majority of my patients who I tapered off K would be in bed. But you seem to be the exception. I doubt you will have trouble later on. Even though you were on a ridiculous amount."  But it gives me real comfort to know you guys will be here in my time of need. BTW, is you avatar a pic of my kittie? Sure looks like her. And yes, K is a beast to the nth degree. I wouldn't wish it on my worst enemy. Well, maybe.....one.

 

Hey Moodle the Noodle:

 

I still terribly sorry you are feeling like S**T. I was hoping that Snow's suggestion would work for you. But alas, no. Not yet. But it may work tonight. You are planning to go even if you have to drag your feet to the airplane steps? You are much stronger than me, my friend. I would be hiding under my blankie. Who knows? Maybe you will feel better tomorrow. Stranger things have happened. Once you get on the plane, I hope you can fall asleep for about eight hours. I don't know why you can't fly direct. I will challenge ATU. He said he will be the one on the top of his roof, waving. I will do the same, but be....naked. Make sure to tell the other fliers to turn their heads for fear of having a traumatic experience. At least you lived there, so you don't have to go through those awful tourist traps. Just smell the flowers and be taken care of by your family. I never did ask how long you will be gone? Or when your flight leaves. I think if we don't hear from you we'll assume you aren't able to post. I like this: Not be so nutso. We can all be here nustso for you. Yes, ain't we all suffering to some degree? I know I am doing pretty well now, but when I get fatigue I am bedridden. Not much fun for me. I feel a trip to the bathroom is like a trip to Europe. Just try and post before you leave, but only if you have the time and feel up to it. I'll be thinking of you the whole time. :smitten:

 

Oh Mozart. Didn't you realize that I knew all along that you would do a direct C/O? You paid good money for Dr. Madill, and yet you are not taking his advice. Well, so be it. You are like a blank canvas to me. It's done and over with. We all warned you before, don't expect any miracles at first. Your body is just so messed up, it will take a long time to readjust. You just have to hang tough and deal the bad deal. I would take a page from Noodle. She is in misery, yet she is determined to get on that plane. Good for her, I say. So now you lied to your PCP. I understand why, but now you have to fess up and tell her the truth. I never lie, except when I feel that telling the truth will hurt someone. Gee, I really like that new dress of yours. So what will the IDDs do now? Once they have learned that you lied? You just have to hang tough and deal until you stabilize. It wouldn't surprise me three days from now that you decided to C/O back to K. I hope this won't be the case. Stick with your Valium. I just can't say that enough. Another thing, as I said to you before. The mind is very powerful. It can change how you feel both pysichally and mentally. Someone once said something I learned a lesson from. I can't remember who said it. But it goes something like this: If you feel you will get sick, then you will get sick. I know you are bedridden and that's a bad deal. But I think everyone said here that in order to get better, you just must distract. Use any method you want. Just don't ruminate about your problems, or they will just get worse. We just want to pound this into your head. Not that we are being mean and commanding, but we really want to help you. So being optimistic, and distraction are really the key. Also, I have seen more times than I care to count that people who are in bad shape just can't help but look for any medical reason, other than benzo w/d, to find out there is something very wrong with them. Like you mentioning meningitis. That, is not going to happen. You would have been dead by now. I know you want to find the source of your fever, and I hope you can. I think that will make you less frantic. Take care my friend. We will be here for you.

Bets

[[Mo...]]

Betsen Schmetsen,

 

The whole time ? Okay... You said it !

 

I'll be leaving tomorrow at 5:30 am and I will come back mid August.

 

I think Snow said 24 hours so I still give her 2 hours till then ...and if this ain't working 

 

Yes, everyone suffers in their own way. To varying degrees , at different times. We are all in the same freaking benzo boat .

 

We do have internet overseas so I'll be able to post 

 

Spent most day in bed and drinking lots of water,  the Snow lozenges ( Snowzenges) , tea, fruit. You name it. My body is in shock from all the healthy stuff.

 

Okay, if you're on the roof naked,  I will wave. And we can both blame it on the drugs.

 

Bye for now. Thanks for being there and take care of yourself.

I think your doc is right. You'll be doing fine. 

[[Mo...]]

BETS it is crucial that you read this. You are a little right and a little wrong about me. I think Dr. Madill knows his stuff. I do. I did not do a straight c/o and would NEVER go back to K. It makes me hella insane anymore. Yes shoot up a school insane...well, almost. It 's more internal. I have done what Dr. Madill told me to do for two doses so far. But it has put me so deep in Hell I feel I ought to go back to just V only because if I were able to reach him he would probably agree.

I am very torn as to what to do and if it would be a little or very detrimental to do. Believe me. I am very very upset that I took K for 4 days of hellish sx on it and disrupted my taper.

Blank canvas? Don't know what you mean

So I don't know which way to go tonight. I do NOT want to be in more Hell by making the wrong decision.

39 years of benzos is a nightmare like no other. I am devastated.

 

As for the doctor lying to her was horrible. My therapist understands why I did it and I know I need to tell her on Tuesday that I lied to her. I will hope she will forgive me

[[Mo...]]

Mo,

Well, for what it's worth , you got your advice from one of the best benzo docs out there.

Take the V is what he said. So how come you do not know what to take ?

 

Cross over hasn't been easy for anyone, I think.I know it wasn't for me either. My husband even posted for me here because I was too freaking sick and out of it. I could not shower, not bear any light, sound, smell. I could not read, watch tv or go to the bathroom by myself.

I'm not saying that to scare you. And it's not like this for everyone. But you seem to miss the point that we DO understand.

I was in bed with a heating pad when it was 92 degrees outside.

( I know you ask us not to scare you. I'd also like to take the opportunity to say that we don't mean to. But you're asking so we need to pour it in words somehow. And most of the people here are fragile and sick and tapering, too. We are all doing this, Mo. And we also read other people's posts... They can be scary to some people, too. I know it affects me too when I open my iPad, some days . When I was in the thick of it , I didn't read much other things on here. Just my replies. And as things got better and calmed down, it gets easier and taking a lot of comfort out of knowing I'm not the only one and I can share with people who know what it's like )

 

Whatever you're Doing , Might feel you're going through hell, yep... And that is what it feels like right now . Until it doesn't anymore. It is not going to be like this forever, okay?

 

I'm not sure why you don't know what to do tonight, because doctor Madill told you what to do.

And of course, it's not goign to be fun and it might be scary, painful, feeling like it'll never end... But it does.

There just isn't much else people can tell you, I'm afraid.

 

There are multiple people on these boards that have been on benzo for a really long time, like you.

They are doing it, some are done tapering, some are al out there.

This need not be the torture if you stick with a plan. Stick with something. And let your body adjust .

IMO it's the only way.

 

I think Bets knows... And I know.. And we all know...

You ask us to read, even read back your posts , urging people to please read. We do. We are reading. We get it. It sucks . You have a fever. You feel like crap.

I think we are all well aware how rough this is for you.

But we just don't know what to say to the same thing either.

All we can do is tell you that we get it. That we understand. And that's what we do. And through that we can support each other. Encourage each other to keep going. That is what I like to do.

 

If anyone had any other answer or solution they'd have posted it by now. I think by now some people are running out of things to say. Not because we don't want to. But because we know what's going on.

You gotta stick it out, girl 

 

You said it would be okay to tell it like it is. And I guess that's what I'm doing. And I hope it doesn't go the wrong way, because it's coming from the best of places.

Some people have had to tell me too when I kept freaking out.

 

Etown used to say " that's what it is , kid" stick with it.

Katz has been there.

snow too.

If you go back on this thread and would read it, you'll see it over and over.

 

IMO , doctor told you to go V only. You got the answer you NEEDED. Now, you're thinking he should have  said something different because ..... What? He doesn't know ?

 

Forgive me for being so blunt. But I think it is time for even a bit of acceptance because that's the only way to do this. Believe me.

That, and distraction.

You're doubting everything because you feel bad. I think we all have or do.

There isn't a quick fix. Nothing will make you feel great right NOW.  But it will eventually, slowly but surely. It really will, if you could just take what's said to you and tell yourself you're doing everything you can at the moment , which is taking your V, you had your blood work done, saw doctor, saw endo,come here so people can encourage you to keep going. We will.

But none of us are counsellors and/Or equipped to diagnose. Or tell you anything different.

And we are all sick, too. We can only do so much.... and I wish it wasn't like that. That I could do anything else.

 

So okay, you lied to your doc. You freaked out. It's not the end of the world.. You could tell her you worried so much, you didn't tell the whole story. If you're sincere in it , I'm sure she will listen?

Be gentle on yourself a bit more?

 

Mo, we are listening.  Some of us have been here a long time. My taper ends soon after 18 months of crap. It hasn't been pretty. But somehow the days passed. Somehow I was able to accept and believe by the help of all the buddies here. It will be a whole lot easier if you accept its not fun, it won't go away by next month and that we are all here to keep telling you it'll be ok.

Time... It'll take time... And it's up to you how you fill it.

 

As drew says: be the canoe! Go with the flow, don't fight it. The mOre you fight it,the harder it clings.

 

Take care now, ok? Wishing you relief VERY soon.

 

[[mo...]]

Hi Everyone,

 

It's been several months since I've been on the board here, but I think about you all and have been trying to catch up with everyone by reading all the threads...whew! I also wanted to give an update since I have changed my taper from standard Ashton protocol to individualized liquid titration and have been working with my docs and a pharmacologist -- and learning a lot as I go along on this crazy journey. I am hoping that my experiences may be helpful to someone else coming along (as others' have been to me) so I am going to go ahead and share them.

 

After a significant increase in sxs (elevated heart rate, erratic BP, severe  myoclonus and twitching, and a resurgence of seizure migraines) when I got to about 9 mg of V per day back in April made my life next to impossible and caused me health problems, I was instructed by my docs to hold where I was until most sxs abated. This took nearly a month, but I was able to go back to work for Spring Term on schedule. I then changed from the Ashton V taper protocol to liquid titration w/ V (1mg V tablet into 1ml 151 proof rum with 99 mls water for solution) per instructions and support from people here on BBs. WHAT A difference! Although not totally sx free, I am functional again -- MOST days. I go to work. I exercise mildly. I travel. I get out of bed. I clean my house. I interact with family and friends. I sleep. I live a pretty normal life! I can't thank those of you who shared your experiences and tips for micro liquid titration enough for making such a difference!

 

I had an opportunity to speak at length with a research pharmacologist who has a lot of knowledge and experience with benzos and other psych meds, and he told me he had never personally dealt with anyone who has been on the stuff as long as I have (over 40 years), but that he believes those who are on Benzos for 20 years or more and those who start on them at young ages (before 21 years old) have special challenges due to the long term effects from the Benzos not only on the brain, but on the rest of the body. He told me to SLOW DOWN because he feels the body and brain communication loop needs a lot of extra time to try and repair itself. He said he prefers a micro titration for patients like me because the individual can hold as soon as sxs emerge, usually when they are less severe than the bigger cuts Ashton advises and he thinks this helps the brain "heal" faster and more readily than big cuts that cause severe and protracted sxs. He said he thinks everyone has to find their own pace based not only on their individual use history and physiology, but also on what is going on in their lives and with their bodies. He reiterated what we all seem to know: recovery from Benzos does not seem to be linear and that the medical community is only now beginning to realize just how devastating long term Benzos use is.

 

So, I started out cutting at 3 mls (of my 1mg V to 100mls liquid, which equals .03 mgs) every day and whenever I felt the sxs come on, I held -- usually only for a day or two. It took me about 3 weeks to cut .5mgs, but I remained totally functional the entire time with very few sxs. Then, once the college term ended and I was no longer working, I decided to cut by 5mls (or .05 mgs) each day because I figured it would be faster --and it's easier to count by fives! However, within 6 days of starting that (when I had cut by .25 mgs in 5 days) I ended up in hospital with a series of seizures and status migrainosus. I could not believe that increasing my cut by as little as .02 mg per day could cause that and I still think it was a combination of increased cuts and extra life stress that caused the problem, but after a few days of treatment and bed rest they let me out and I am back to cutting at only .03 mgs per day and holding as needed...I just keep telling myself that slow and steady wins the race.

 

So, while there is still a part of me that just wants to quit my last 6 mgs cold turkey because I still find it hard to believe that three one-hundredths of a mg could make any difference, especially when it's V (and not a short acting Benzo like Lorazepam) I am beginning to be convinced by my own experiences now that the very slow micro liquid titration is the right way for me. I would rather take an extra 6 months to get off the stuff and be able to function and live my my life than deal with the difficult sxs that made normal life impossible when I was on the Ashton. Even my CONSTANT headache, that lasted from November to April finally went away...now I still get headaches, but they go away.

 

My advice, and my personal mantra, at this point is find what works for you as an individual and realize that there is no "perfect" or "one right" way to do this, but you have to be committed and informed, as well as have good support to do it. I NEVER thought I would be micro tapering, but it's working for me now and if I find at some point it doesn't, then I'll try something else, but between the Ashton XO from A to V, with which I started, and the micro titration method I'm now down from about 30mgs equivalent of V to 6.30 mgs V in 8 months and I am now really functioning pretty well during the process (most of the time) and enjoying my life!

 

Best wishes to all and again, my thanks to BBs!

 

Mo

[[Mo...]]

Hi Mosart!

Good to hear from you.

I'm so glad you were able to pull out of the worst of it. I also believe slow and steady does it.

Thanks for Sharing your conversation With the pharmagologist.

I'm typing on my phone.  Not handy.

So right now I keep it short but wanted to say hello and hope you'll be feeling better and better.

Healing is happening !

[[...]]

Hi Mosart

 

I'm a former professor of pharmacology and I believe the pharmacologist you spoke with has it exactly right. A slow micro-titration, holding whenever necessary is the most physiologic way to go. I also believe that ultimately you will heal at the fastest rate with this method while minimizing symptoms on the way down. This was born out by my own personal experience. Don't ever "push" the taper or strictly adhere to some arbitrary schedule. We will all eventually heal pretty much however we get off the benzos, but the slow taper, going at whatever rate keeps symptoms down makes the most sense from a scientific point of view.

 

Good luck.

 

Bart

[[Mo...]]

Moodle yes I wanted back on my V taper. Dr Madill told me to mix K with V for two weeks, then back to V for two weeks then restart taper. I disrupted my taper and stabilization on V by going back to straight K in fear of V being the actual cause of my fever (got down from 30 mg V to 17 mg) but if it is the cause suppose I have to take it with fever  which is not safe to do. I have no choice.

 

I have had a fever for a couple of months. It would scare anyone. I didn't go to endo. Dentist yes but canceled endo. They said it probably wouldn't present with fever.

 

I wanted to go back to my V taper but I was only on straight Klonopin for 4 days. I disrupted my taper and confused my CNS by going on that K. . K, after years of taking it, gives me very bad paradoxical effects and tolerance. So, for 2 doses I mixed the K and the V but had to go straight back to V only as of last night.

 

I knew in my heart if I could reach Dr. Madill he would have okayed it if the reverse c/o was killing me the way it was.

 

I am hopefully clearing this up for you.I know to go back to V. I was only on straight K for 4 days which I shouldn't have done and my non benzo wise doc let me. But again, I only did it for fear V was causing this ongoing fever. I had to go straight back to V last night and get back to my taper after REstabiling on V. I just couldn't do the K with the V. I did it for 2 doses.

 

I hope you feel better for your trip.