I felt great yesterday. Out of the blue, after having amongst the worst day yet after a string of awful days.
The day before I literally could not stay seated without feeling very dizzy and nauseas. I had to lay down. I could not walk without being hunched over and I had to ask my husband to watch me as I walked out to the car without him to lay down after we tried to go to lunch—I wanted to make sure he saw me if I collapsed.
Then yesterday. I woke up and felt sick as usual—quite nauseas. But then it lifted and I felt pretty good. I went out and had lunch, ran errands with my husband, went to the presidential candidate campaign office I’m voting for and asked about volunteering—I can go in whenever I feel like it without commiting—that’s my type of volunteer job. Then I made dinner later. Good day all around.
In the evening I called an old friend I hadn’t talked to in quite some time. She is a psych med withdrawal expert. She would balk at that description and I understand why—we are not scientists, we haven’t run clinical trials on withdrawal, but she and I and a handful of other lay people out in the world know more than 99% of doctors and people who should be experts. Anyway, her knowledge comes from moderating one of the biggest benzo boards, where people are coming off all drugs and she herself came off of 15 drugs including several I’m contending with. In moderating that huge benzo board she sees more than I ever do. I deal mostly with a much smaller benzo board. The “big board” as it’s called among us at the little board, scares the shit out of me. So many people out of control and freaking out. I can’t deal with it. There are hundreds of messages a day and the moderators (perhaps not all of them) but the ones in charge are anti-supplement so I tend to stay away. Though recently I did get some good advice regarding my adrenal and hormonal system. It’s a good resource I keep available to me but I just can’t deal with it all the time.
However, my good friend works there and she has a wealth of knowledge, both personal and in her processing messages and responding to so many suffering souls. I called her just to say hi—I felt like I’d neglected her as I have so many of my friends. But the call turned into a major informational experience for me. I explained to her that I felt good, out of the blue and had been very sick for more than 2 months. I told her I had a couple of good days here and there but the vast majority of the last 2 months has been the worst time of my life. She told me that what I was experiencing yesterday as I was talking to her was a “window.” That during withdrawal and then afterwards during the initial recovery years people experience great illness puncuated by “windows” of time in which we feel almost normal. That it seems to be the way the brain adjusts itself.
She still goes through this process herself. She is in grad school and still suffers withdrawal pain two years clean on occasion but her “windows” are bigger and bigger and she is, obviously, living a satisfying and productive life.
To make a point here this process is common among those of us with protracted problems. Not everyone suffers in this way. But it was downright thrilling to hear someone explain my experience while making it clear she had seen it again and again. This is the normal withdrawal and healing process for thousands of us. This board currently has over 3,000 members and thousands of others have come and gone. It’s a wealth of information. Everyone of course is involved with benzos but their are also many who are coming off antidepressants and neuroleptics and other psych meds. I will, when I feel better, start studying what they know there. I have, of course, spent time in their files and archives when I first joined, but it’s clear I still have much to learn.
When I visited the board last week to ask about my current health condition and said that I had stopped tapering for the last two and a half months one of the moderators asked me, couldn’t I just taper in minuscule amounts? I answered confused….shouldn’t I be more stable before continuing?
She didn’t answer but my friend on the phone yesterday explained to me what she imagine this other moderator was thinking. At some point we simply reach tolerance withdrawal and it doesn’t matter if you take a break. Of course the tapers still need to be done carefully and slowly but waiting too long only prolongs the misery. I asked my friend, do you think I will suffer like this for the rest of my withdrawal? That I won’t be well until I’m off everything and then have additional time to recover? She agreed this was probably the case. I heard both relief and damnation in that statement. Relief in that I could count on the withdrawals taking a couple of more years and that I knew I would probably feel shitty most of that time, graced with “windows” from time to time, but that there was an end in sight. After that couple of years of withdrawal there would then be many more months and perhaps a couple of more years of recovery but that the end result would be real recovery in a few years—that brought relief. And I felt damnation also because recovery was there in a few years. It’s a damn long time—a few years. Sometimes I despair so much I don’t know how to make it through the day. But there is optimism mixed in with my pessimism—no doubt about that—there always has been.
So last night I called my psychiatrist and asked for 5 mg pediatric Lamictal tablets. I’m going to cut down 2 1/2 mg at a time. Every week or two. For now that is about a 2% cut. I was cutting by 25 mg since I started the taper at 400 mg. The cuts really need to be 10% or less of current dose so by the end there I was tapering much too big chunks. I’m at 125 mg. It will be a while going at this rate, but there is no turning back and I need to get off this stuff so my body can heal and so I get out of the hell that is tolerance withdrawal. I’m not so sure the Lamictal actually causes tolerance withdrawal, but I know the Risperdal and Klonopin do and I have to get off of all of it.
Right now I’m making the choice of Lamictal for convenience sake. I’m taking a 100 mg tablet and a 25 mg tablet. Two tablets are much more expensive than one. So I’ll get off the 25 mg tablet and then switch over to tapering Risperdal and Klonopin. I will leave the last 100 mg of Lamictal until the end as I’m more concerned about the Risperdal and Klonopin causing tolerance withdrawal. Also I know the Lamictal withdrawal has been the trigger for the monstrously out of control fatigue. I do hope I might recover from that to some degree when I resume tapering the last .75 mg of Risperdal and 3 mg of Klonopin.
So this window lasted only one day. I’m sick again today. But I had a window that lasted a hole week about a week ago. I can look forward to another longer window. I’m sure they will come.
Joyce,
that unfortunately is the nature of benzos….for many many people they stop working and make things worse…your doctor may tell you simply that your “disease” has gotten worse…
Diet, nutrition, meditation, and exercise can all help.
there are a couple of benzo yahoo groups that might help…one of them is:
http://health.groups.yahoo.com/group/benzo-recovery-naturally/
There are also many books that can help teach how to cope with anxiety naturally—one being:
Get Out of Your Mind and Into Your Life by Steven Hayes
Recovery Inc meetings can help a lot too…
http://www.recovery-inc.org/
If you need help with diet and nutrition look at my about page
http://bipolarblast.wordpress.com/about/
…just for a bit of a start…shouldn’t be your end point…all of us have to find out what is right for us on our own and that usually requires some research.
Hi,
I’m not sure anyone will read this post, since it is at the end of a long line of posts. I have been on Klonopin .5 mg every 6 hours. It seems that the Klonopin suddenly stopped working. It had been my anxiety and panic attack saviour for the past 19 years. Over the past year, it seems to be causing all of the bad side effects that it was supposed to be helping. Even taking higher dosages didn’t help at all, and in fact made me feel worse.
Does anyone know if this happens sometimes? I thought my anxiety and panic were totally gone, until the drug seemed to konk out. I’ve gone to a doctor who has put me on Valium (since it has such a long half life), and am slowly getting off the klonopin. I’m worried about then having to get off the Valium.
If anyone has any support for me, I need it very badly at this time. I feel like I’m in withdrawl 24/7. If anyone has had success at withdrawing from Benzo’s, I’d love to hear from you, or if you are in the midst of withdrawing, I’d also be very grateful to hear from you. I hope that my post gets read.
Thanks so very much,
Joyce
congratulations Mickey and I deeply admire your patience and perseverance…you are truly doing this the right way…
I have been tappering from Risperdal for 2 and 1/2 years. I started at 2 mg.’s in November 2005. I went on a 10% reduction every three months to where I am currently taking 1/2 of the smallest dosage of Risperdal they make – .25 mg. Although, 2 and 1/2 years seems like such a long time, it has been worth it. The last dosage reduction has been the hardest, but I am determined to see this through. I have been on neuroleptics for 25 years. I started with Mellarill when I was 17. I took Navane for about 15 years. I have been on Risperdal for the remainder of my phychiatric drug career. After I am finished with my taper on Risperdal, then I will start my journey to withdraw from Zoloft (sertraline-generic). With Gods grace I will accomplish my goals piece by piece. I feel more alive now than I have in 25 years, and I know that it will only get better. I have disciplined myslef to exercisize 40 minutes a day and I am eating healthy. The book “Your drug may be your problem” by Peter Breggin and David Cohen has been a great help in my withdrawal, along with memorizing scriptures from the bible on healing and health. I now finally realize that I can do all things through Christ who strengthens me. He gave me the pathway to healing and its up to me to implement it.
No…I broke open the capsules and did the bead by bead thing. I was only on Effexor for 2 or 3 weeks, thank god. I worry when I hear of people who take it long term. It took me a couple of months to get off it it. I mainly remember the dizziness. It was hard to walk and drive and think straight.
I did have to taper Effexor slowly….my husband broke open the capsules and counted about five less of the beads per day. So even though I didn’t suffer when I did it that way, the only way I figured out to do that was because initially I did get sick and thought I wouldn’t get off.
The thing is I figured out it had to be tapered super slowly, but I still managed to do it in about a month after reaching 37.5 mg and many people cannot do that at all. So I was lucky…but I do know how awful it can feel from when I tried to cold turkey at 37.5 which is what my doctor told me to do….I would never have survived doing it that way.
Anyway…I know some people suffer with just 1 or 2 mg cuts. And need to wait a few weeks in between.
Did you cold turkey?
That’s funny…our bio-chemistry’s must be so different…Effexor was the absolute worst for me…I still marvel that I got through it. It greatly helped that I was unemployed at the time, and receiving unemployment, so at least I didn’t have to hold down a job. I didn’t have the supportive relationship at that time that I now do, and I just suffered through it, alone, in my dreary one bedroom apartment and kept my mouth shut about it. I was afraid if people knew what I was going through, that they would lock me up in a mental ward and that would be it. But I’ll never forget what that felt like.
Yes Doe,
It’s strange…I had a really easy time coming off SSRI’s and Effexor too which is known to be one of the very worst to come of off. I was on SSRI’s or Effexor (SNRI) for about 14 years….came off Effexor once without much problem…and then Zoloft was the first drug I came off in this withdrawal period it was even easier than the Effexor.
Now Lamictal and Risperdal have been hell! I hope I will have an easy time when I get to the Klonopin—I feel I deserve it!!
I’m having another good day today and one yesterday too… so that makes 3 out of 4 days good…that’s pretty much a record—and I started to taper the Lamictal again too—but by only 2.5 mg last night.
okay…I’m really busy today…which is really nice…hopefully I’ll be able to post tomorrow…
take care everyone.
I’m glad you had a window, Gianna…at least there’s that. They seem to come just when we need them.
You are so right about us all being different…I had no problems getting off benzo’s or mood stabilizers (including Lamictal)…It was hardly noticeable…However, I’ve had a dick of a time getting off ssri’s. I’m just on a tiny dose of one now, but if I try to get off of that, all hell breaks lose–I become endangered of losing my job, my relationship, and basically can’t function…
I wonder if it’s the time on the drug that matters most? I was on the benzos and mood stabilizers under 5 years…Maybe between 2 and 3 years. With SSRI’s, it’s been 15 years.
At any rate, I’m thinking about you, following your blog, and wishing you well. I feel strongly you will pull through this. And your blogs, whether you are doing well or having a really hard time, are really helping the rest of us more than you know.
I do not think we can blame ourselves for having been put on medication. Our culture demands that people take a lot of pills.
In my case, I ws taken to a hospital and put on meds. I had no say. Many of us do not understand what is going on–we are not doctors. We assume the doctors know best. We have to accept the past–we can’t change it. So what if we have a big hole to climb out of–the process of climbing out of our holes will have us self respect and will give others hope. Whatever doesn’t kill us makes us stronger.
Jim S
I’m currently removing a benzo–the dreaded xanax i was on for 9 years! I questioned the need for it , and frankly think it induces more anxiety and depression, and weight gain.
i’ve put off tapering off of xanax, due to 1.the horror stories out there 2. my own experience with withdrawal symptoms emerging inbetween doses, thus eventually going on XR version, which then 3. caused me to dread it due to having to remove XR and go back to generic alprazolam[far cheaper].
I suffered enormously during Seroquel withdrawals, and feared the Xanax as a result of that experience as well as my negative Prozac withdrawal experience.
Surprisingly! I’ve not had any thing other than headaches with my slow taper down of the Xanax. The headaches come and go, and are whoppers when they hit, but no other problems. It really has blown my mind.
I took 5 weeks to taper down .25mg from 1.5mg per day to 1.25 per day. Because these are basically tranquilizers, it’s not a wonder we feel tired and then fatigue can be such a bad withdrawal symptom on top of it.
I think I’ve suggested this before as a culprit to your fatigue, is the Klonopin–but of course this is about what you can handle and want to do; I’m here supporting!! sometimes, I wonder if you just want to toss those pills in the trash and say “fuck it all!” it has got to be frustrating!
Keep taking it one day at a time, and thankfully there are good ‘windows’ of days.
Stephany
i am so glad for you. i think these little “windows” are our incentive to keep persevering. wouldn’t it be nice to live is a darn greenhouse! well, one day soon…life will be more windows than walls. hold tight to the memories of all good days so you have something to pull you through the not so good days. remember what things looked like…smells, tastes, touches…that feeling you get in your stomach when things are good…the rush of joy in your heart. on the worst of days reach back and remember as if you could just feel it…not with longing or woe but anticipation of the next time.
sending you good thoughts,
s
http://missisyphus.wordpress.com
skipping the stone across the lake—thank God for the “windows”!!!!
((HUGS)))
Good point about people on benzo boards and I actually hadn’t thought of that — duh! I know you’ve talked to people on multiple meds so that’s probably the best resource. I’ll remain hopeful too.
also, as far as getting info from benzo boards, I can tell you that anyone who has suffered badly from benzos believes that benzos are the hardest most awful drugs to get off of and my experience is that that is not always the case. I’ve talked to many multiple med users who found benzos to be the easiest drug to get off of…so it’s simply never clear who will have the most trouble with what drug.
people are in the benzo groups precisely because they are having problems…those people who don’t have problems aren’t there and there is a large percentage of people who don’t have a godawful time coming off of benzos.
I remain hopeful that benzos will prove to be an easier drug for me than Risperdal and Lamictal have proven to be!!
I think just like you do Sara…about all sorts of possibilities, because we just don’t know what is going on when multiple meds are involved.
Klonopin can of course cause horrible tolerance withdrawal….but it doesn’t always…and no I don’t think so simply as to think a symptom is directly related to the last thing I tapered….it’s way to complicated for that…I know you’re saying that…it gets very frustrating.
I really shouldn’t offer advice since my only experience is second hand but I also have been following a benzo withdrawal board and researched benzo withdrawal pretty extensively because I had a friend I was trying to help. On the basis of that I really do “worry” about that 3 mg of Klonopin to be honest. I don’t know where you think that fits in as far as your current symptoms go. I wonder how you decide which drug is causing which symptom. I guess you think if you change a drug and then the symptoms change it’s probably related to that, but it could also be the remaining drug now having less to counteract it or reaching some tolerance threshold. Anyway just a theory and I know anyone going through this is moving in the dark. And I’m not sure my “theory” really offers much in terms of constructive help about what to do next. I just wish you the very best of luck in continuing with your taper and sincerely hope you succeed. It’s tragic but I do believe you can recover and obtain a much higher quality of life even if it is a few years down the road. Glad to hear you’re volunteering for a campaign — I think that’s a great idea!
ah…they were all non-drugs for me when it came to anything healing. None of them ever helped. They deadened me, slowed me down, made me stupid and agitated, but I never stopped suffering because I’m not bipolar—I just have relatively minor characterological issues that need to be dealt with. And I’ve had nasty side effects of meds for so many years I don’t hardly remember what it was like before the drugs—except that I was okay. Why couldn’t I remember that before 25 years had gone by?
I’m addicted to these meds. I’ve been on them for many many years. The frontal lobe of the brain shrinks on neuroleptics—just think how the brain chemistry has to right itself after 25 years of meds if the brain has actually shrunk. All three of the drugs I remain on create dependency in at least some people and with Klonopin and Risperdal most all people.
I was stupid to take drugs when they clearly did nothing for me and in retrospect made me worse. That is what makes me angry. I chose to take this shit. I did not listen to my body which told me all these years that the drugs were hurting me, making me sicker, fatter, slower, duller, numb. And I never had dangerous or scary behavior that needed to be controlled except when I was on hallucinogens so why did I think I needed them? Why did anyone think I needed them?
And this is just the tail end of the story. I was on many more drugs…I’m off much of what I was on already. The nightmare that was antidepressants is over with thank god. Ditto with the stimulants. I have come a long way and yes I do have hope that it will be better and that it won’t all be ugly…but I don’t always feel it.
Ugh
I’m sorry if this sounds like a rant…I guess it is a rant…and it’s long enough to be a post too…but I have my next two posts planned and they will be more optimistic….I’m really not all dark and ugly all the time. I’ve been thinking about some positive stuff….and Susan your last post triggered some of it…I’m still hoping the thinking I’ve been doing will get articulated in a post!
thanks everyone for all your support…. In the future I certainly hope I can bear greater fruit out in the world but for now the community this blog has created and takes part in feels like a productive and positive thing in my life.
Gianna,
I’m also glad to hear you had a window, and it’s kind of a nice visual image. Sorry it hear that it didn’t last longer than a day. I never knew the terminology for it, but when you have a “great” day, it’s so awful to feel so down the next day. I’m so sorry!
For me, Lamictal was a non-drug. It didn’t help, so it didn’t hurt to get off it. Klonopin was a terrible medication for me–and made me feel awful when I was on it–although I only used it at night to sleep. I’ve never taken Risperdal but it made my sister-in-law very ill.
It only confirms that everyone feels differently on different medication. I also believe that sometimes we feel bad–because we’re so fearful about feeling bad. So, no wonder what anyone says (even a dear dear friend who is so knowledgeable), it could be that it won’t take you that long to feel better. While it might–it’s also possible that you’ll beat the odds.
For me, hope makes all the difference.
Susan
Good to hear that you had a good window. Your thoughts and feelings sound like what my buddies feel like getting off booze and other drugs. Basically, we just tie a knot and hang on during the bad days. We try to be grateful for every little bit of progress. We say that time takes time. We never seem to progress fast enough. We constantly see how we have gotten years behind in living. But there does not seem to be any other way, but walking though the pain. What seems to help is sharing with others what we are going though. No one said that you can’t have some successes before you are totally off all meds. Some of us have to view ourselves like someone with a bad back. They can do some things, but not others. Some days they need to just take care of their backs. Not too many people stay completely free of all sorts of major problems for very long. anyway, good luck, keep on hanging on.
Jim S
I am so glad you had windows of feeling better – such great incentive about the possibilities in that it gives you a glimpse of the future. Wow!
It amazes me and scares the hell out of me that it can take so long and be so hard to get off of these meds. And that the doctors that we trust with our health and our sanity don’t know much of anything about the process. Your blog has really opened my eyes to that, and I’m not putting anything else in my body without carefully researching it for myself first!
I’m glad you are feeling like there is some hope, but damn, years is so much time to feel like hell. Hang in there! You’re in my thoughts.
–Jazz