My orthomolecular psychiatrist is out of the country so I followed him there. My symptoms have really not abated since I started my period. I’m dark, hostile, angry and depressed, though not in the same despairing way I was while premenstrual. That certainly made things worse. I am, however, still a complete mess.
Yesterday I cut out all the B vitamins wondering if those were stimulating me, but I still only slept less than 5 hours again last night. So I called my doctor when I woke up. He gave me a few options, none of which do I feel optimistic about. One is to stop all supplementation mostly to see if some additive ingredient is causing a problem. He does not believe the actual nutrients could be giving me an adverse effect. Second is to stop the zinc supplementation meant to balance my zinc/copper ratio. My copper was too high and high zinc will bring copper down, but initially it chelates copper out of your system which raises the blood serum level and could be giving me symptoms. If this is the problem I will have to go back on the zinc at some point but I would at least know that it would pass and that it would ultimately be short term.
The last option is to increase the Lamictal dose a bit which, frankly, makes me feel defeated. He encouraged me not to feel that way, but if that is what I have to resort to I will. Shit, it feels like I should get something out of all the suffering I’ve gone through and the prize for me would be staying on a lower dose and feeling good about it and healthy.
He also said something that rather annoyed me. He told me to get a job. I explained to him that I can’t maintain commitments, that I haven’t been able to do this for over a year and he didn’t really get it. It kind of pissed me off. He doesn’t hear me when I explain some of my symptoms. Or thinks that if I just distract myself someway they will go away. That makes me angry. I explain the great enervation and it’s like it doesn’t sink in at all. He does not get how sick I am. Anyway, I have to ignore that, but I find it terribly annoying. I don’t understand why doctors sometimes seem completely unable to truly empathize or believe what their patients are telling them. He actually got annoyed with me when I told him I couldn’t work.
Anyway. I need to forget that and do the practical things he suggested. I’m going to start by cutting out zinc because it seems to me I remember feeling worse when the woman I saw prescribed zinc and I stopped it on my own because it was just one thing I added and it was easy to figure out that it was making me feel bad. The thing is she didn’t tell me it could do that. He did tell me that but I forgot and there are so many variables because I started several new things that I just didn’t know what to pinpoint.
I hope that takes care of it, although if that is the problem I will have to go back on it and suffer for sometime as that is the only way in the long run to lower the copper which is too high. Cross that bridge when I get there.
Lastly, I have to wonder how much of this might be the underlying me? That’s a very confusing issue. I’ve never been like this in my life. Never. I’m talking mostly the hostility. I have to stay away from my husband a good part of the time because I’ve become downright abusive. And I’ve gotten in shit with strangers at stores. And I lose it if I drop something in the house. It’s out of control rage. My therapist thinks it could in part be underlying stuff. Not pathology, in terms of “chemical imbalance,” but psychological stuff from childhood. The internalization of my ugly, abusive, father. Lovely to think that maybe I’ve turned into the prick my father was. The only consolation in that is that I can see that I’m a prick and he never could. That suggests there is hope for me.
Anyway it’s all too much. I’m so sick of it.
I’ll go off the supplements in the next few days and if I don’t find a problem there then I’ll increase Lamictal by 25 mg for some unspecified amount of time. Damn.
You know I’m always telling people who write comments here to increase their dose when they’re suffering. I don’t know why it’s so hard for me to take my own advice. Though I do see people again and again refusing that advice. It’s an interesting thing to note about us. Once we decide we want off these drugs we’re willing to suffer—but the question is how much suffering is necessary and how much do we impose on ourselves by not taking it more slowly. To me it’s a conundrum because I honestly don’t know if dragging it out and suffering a bit less, relatively less, for a longer period of time is worth it. Maybe it’s just better to suck it up and get my ass through the tough shit. And no one really knows the truth. So I think that is what we are always balancing. Suffering a lot for a shorter time or suffering somewhat for a very god damn long time. This has been going on on some level for a very very long time with no clear end in sight. I guess it may be possible to slow down so much that I have no symptoms. But I know that would mean basically extending it another several years. How does one come to terms with that? But even then I don’t believe the chronic fatigue will pass until all the drugs are out of my system, because I’m quite sure the drugs themselves are part of what is making me sick. There are simply no easy answers.
I do not know your situation too well, as I just found your site a little while ago. I may be off base with my remarks, but you may be able to get something from them.
I agree you are doing a great public service with this site. I set my site up a number of years ago, and I felt all alone–a voice in the wildness battling the drug companies. You site is going places that I was not able to go. Just by passing on research you are planting the seeds for change. I love research. Eventually, the mountain of evidence against mind-dumbing drugs is going to force the world to look at alternative methods. You are an important cog in this coming revolution of thinking.
I like what a comment said:since all suffering comes from not being able to accept what is…when we rage against reality. You don’t have to like it, but if you work on accepting it, you will have some relief.
I’ve had a number of bad experiences with parents, teachers, authority figures, and people in general. I carried the hurt around for many years. Eventually, I came to accept the world and myself as they were. I was taught to always look for the good in situations. My zen professor said that “All things are. They are not inherently good or bad. It is our mind driven for fame, power, etc that causes our suffering.” No, the hurt did not completely disappear. The pain from my past was like a very loud radio in the room. I could hear nothing else. I could not concentrate on anything because of the noise from the radio. Today, the radio is on in my mind, but it is very low–I can still function with it playing. I am not forced to nothing but sit and listen to that same awful music over and over.
In my search for meaning, I found some purpose in life. It did not bring me fame or money, but it gave me peace of mind. You have a purpose. You are helping others. You have helped me. I was burning out trying to help people with their mental illness. You have sparked a fresh enthusiasm in me.
By the way, getting a job, a small, simple job just might help you–something part time and simple. I have held many jobs, but today I’m happy with my hobbies and with a few part time jobs like walking dogs, cleaning up at construction sites, and moving things. When I get done for the day, I can see that I’ve done something. Sometimes, we need to physically move around to change our mental chemistry.
Good luck. I do not mean to tell you what to do. I just offer suggestions from my own experience. What has helped me the most has been people with my same diseases sharing from their experiences. They told me their stories of recovery. They gave me hope. I love to study research, but my real help comes through other people.
Thanks Carolyn,
I was taking Inositol and have heard of using Choline. And I keep lavender in my room!
Right now I’m eliminating everything and starting over. I’ll look into the Choline when the time is right. Thanks a lot!
Gianna: I forgot to mention lavender oil. Either in your bath water or in a burner. Very calming especially before bed.
Take care Carolyn
Gianna. Have you tried Choline Bitartrate. It calms the mind and helps with rage and anger when coming off the meds. My daughter takes 500 mg 4 times a day and it really helps with her feelings. Also inositol powder helps calm the body. Great for sleep. put it in a smoothie. (sugar free). A heaped teaspoonful four times a day. Also great for anxiety.
Good luck. I’m rooting for you.
Carolyn
First and foremost, please please try to be compassionate with yourself! It’s so important. Being angry with yourself, for any reason, leads to intense suffering. Try to constantly watch your mind…try to stay in the moment. It’s when we think about what’s going to happen in the future, and what’s happened in the past, that, at least for me, I get way off base. I have to stay constantly mindful, just concentrating only on what I’m doing that very moment and nothing else. It’s very difficult, but can keep one at least partially grounded. Contemplate over and over and over again to respond to self-hate with compassion and answer anger with kindness towards yourself. When you wake up in the morning, rejoice that you didn’t die in the night, knowing you have one more useful day. Do you realize that what you are going through is benefiting so many people? There’s karma involved, but as you go through this process, you are burning away so much negative karma it’s incredible. I know that you know that if there’s any way you can create some kind of spiritual practice to help guide you through this, it will help tremendously. I spend all my time reading my Buddhist books in an effort to keep my mind from going off the deep end. And as you go through this, try to realize that you can dedicate the merit of what you are doing, because it is very meritorious, to all other beings who are following this path of getting off meds. You are contributing so much. Keep that in mind. And as much as you can, contemplate on the preciousness of human birth, (you are here for a reason) our impermanence, (our time here is very short and each and every one of us will pass), karma, and the suffering of others. Then read “Gates to Buddhist Practice” by Chagdud Tulku. It will change your life. You are such a beautiful person…you have such courage, and you will, eventually, be free from these toxic chemicals in your precious human body.
Gianni, work at a no-kill shelter! Or with a group that fosters animals in individual homes and does adoption events/phone triage through a website. With your background in social work, you could really help with the interview process to weed out people who are not really ready for the commitment that a pet requires. Go to petfinder.com and enter your zip code to find a group near you.
You’re an incredible source of information, food for thought and inspiration for so many people. Don’t berate yourself as rage comes out. It too will pass.
Gianna: Good luck with the options that your doctor has given you. Take care.
You were asking about the massage. I would massage myself from the head down to the feet. The important parts if you are in a hurry is the head, feet and ears. Although no oil is to be put in to the ear canal.
The oil is warmed up. I use circular movements on my joints and long movements on the arms and legs. For my stomach I work in a huge clockwise circle going up as far as befow my ribs.
You dont do it after eating. Wait at least 20 mins before showering. You can use shampoo but not soap as its good to leave some oil on you body.
I just think that its a beautiful way of starting the day. It is a very nurturing practise – it develops a beautiful sense of touch. A very nice way of earthing oneself.
You can take all the space you need Terri!
Yes, some B vitamins can indeed cause problems–but I’ve been on B complex for a long time—so it seems strange—however I started taking higher doses of individual B’s so I’ve had the same thought.
I am, however, in the process of doing exactly what you suggested except with ALL my supplements. I cut out everything but the aminos last night and I’m going clean for three days then introducing supplements one at a time every three days. EVERYTHING– not just the B’s.
I want to know what I’m taking is helping and not hindering. Thanks so much for commenting. It’s important that other people know this too.
Oh…my friend, the director of a psych med withdrawal center thinks B-12 is the most likely culprit among B vitamins if that helps any.
Gianna:
I know we haven’t emailed in awhile (and then we only did just a little bit anyway!) but just wanted to interject my own thoughts on one thing.
I have found that during this weaning I cannot, and I mean CANNOT, take a B Vitamin complex. It makes me edgy, anxious, sleep is scanty, you name it…..I’m not quite sure which B it is that is affecting me but I’ve gone both on and off and have totally keyed it into the fact that it’s the B complex I was taking.
I even tried a “different” B vitamin complex, thinking maybe it was the fillers used. But no, same situation….
The only thing I’ve changed now is that I’m introducing B vitamins one at a time into my system….for instance, I started taking Folic Acid about 6 weeks ago and have been having no problems with it. I’m planning on waiting another few weeks and then maybe trying B-6 after that….
So, all this being said, I just wanted to let you know of my experience with B vitamins in case it helps you at all!
(Oh, and the idea of working with doggies at a shelter sounds wonderful…..)
So much more to say but I may run out of space, I think???
Terri
If you are just up-front about possible difficulties in sticking to a strict schedule, I’m sure they would be happy for your help in any form it comes!
Try to find a no-kill shelter if possible — but think of it this way, even if you are only providing aid & comfort to condemned prisoners, you are still performing a vital service…
Val!!
You’re genius…helping animals at a shelter sounds like heaven — a little exercise along with being with doggies would be nice too. Yes I would like that. My concern is that I’m not reliable. Would anyone want someone not reliable? Otherwise it sounds like the perfect low stress volunteer job.
I’ve had several jobs since I went on disability and they have not worked out. But this is a much less stressful situation I think—as long as I could stay relatively clueless about kill rates—that might really depress me.
anyway, thanks for the suggestion–no shield necessary.
Don’t hate on me for suggesting this [raises shields], but how about some lite volunteer work?
I know you love your kitties; maybe you could find a local shelter or rescue organization, go in for half a day once or twice a week, & volunteer to groom/walk/exercise/or otherwise socialize potential adoptees?
But hot damn! what pharmacomania!!! (37 drugs)
yeah seeing that number of psych meds makes me want to cuss, so i’m refraining!!
ha ha!!
for those of you who don’t get the joke, see here
Tell your doctor to take 36 (make that 37) psychiatric drugs, and call you in the morning……
Duane
Don’t know exactly what to say –
Other than these things can be complicated – extremely complicated……
Psych drugs in, and psych drugs out…..
Naturals seem to help, and then we’re not sure –
Which ones, which amounts……
Go back to work?
You know, when you’re feeling good – when this is behind you….
You’re gonna do some amazing things (not that you aren’t already) – But, when you really get well…..I’m gettin’ out of the way –
Duane
thanks everyone.
Sara,
yes I’m well aware that some of my symptoms can simply be that I’m ON benzos. That is yet another complicating factor. I could be having these symptoms solely as a side effect of the drug without even having started withdrawing. It gets so overwhelming and frustrating. There are so many variables.
Stephany,
I do have epstein barr, but was told it’s unclear if it’s active. This was many years ago. What I’ve been told since is that it can be triggered off and on—so yes, yet another variable.
Doe and Sloopy,
both your words are very kind, wise and inspiring.
I want to respond at greater length to everyone, but I’m very tired. Know that all your comments are very much valued.
Also, you could have Chronic Fatigue Syndrome alongside the med removal, which if so, the fatigue kicks one’s ass BAD. I’ve got that, and the fatigue, when it hits is not even describeable. Stress triggers episodes for me with that. Have you had a blood work when feeling really fatigued ? have them check for the chronic epstein barr virus. That’s what I did, as they also ruled out Lupus. The body attacks itself, and these are things to consider. I was tested for that and have it long before I ever took a psych med. Though, in 1989 I was offered PROZAC for the fatigue by a PCP! I declined, not wanting to take anything but vitamins. Imagine, way back in 1989, I NEVER knew what Prozac was.
Just hang in there, and if you cuss and scream when you drop something, that’s F’ing ok!! get it out!
Pat’s comment reminds me you still have that benzo lurking in the background. I’ve read so much about benzo addiction and dependence even though I haven’t experienced it but I just can’t help worrying that that’s playing in here in some way. Maybe removing the other drugs is aggravating the benzo problem. I am sure benzos cause or at least aggravate chronic fatigue, intense anger etc. Have you read Addiction by Prescription by Joan Gadsby? It’s really a good account of long term benzo accidental addiction (but doesn’t have any specific advice on withdrawal). Anyway I know probably the last thing you want to hear right now is another speculation about what’s going on when there are so many things that could be at work. I truly hope for your ultimate success.
Keep at it, Gianna!
Battle away, honey!
It’s transient trauma, for sure. You’ve cut a lot of meds out in a short space of time, and your body, brain and mind are simultaneously saying “ouch!”
What you recount below got my back up:
He also said something that rather annoyed me. He told me to get a job. I explained to him that I can’t maintain commitments, that I haven’t been able to do this for over a year and he didn’t really get it. It kind of pissed me off.
But there’s the rub – you do work!
You’re a very dedicated voluntary worker who runs an extremely popular online self-help forum for people withdrawing from psych drugs.
And moreover, you don’t charge $500 an hour consultation fees!
Tell him to poke that up his pipette!
Though, I wouldn’t personally ditch his general health advice or his supplements.
He just sounds like a typical quack – frustrated and impatient that his well-intended efforts aren’t showing immediate effects.
Conservative motto of the day: steady as she goes when it comes to any change!
Best,
Sloopy!
Ditto to what Pat said (so wise): We all hate to have to increase, but we know deep down when it’s the best thing to do. It does not mean you will never get off the drug, but almost all of us want to get off of them faster than what our bodies can actually deal with. I find when I’m in too harsh/stressful of a withdrawal and I’m going through all the self-loathing and hateful, rageful feelings of the thought of having to increase (feeling like a “failure”) that that’s part of the distorted thinking of too much stress. Once I actually do the (very slight, modest) increase, and my body sighs from relief, I think “why was I making such a big deal out of having to increase”…because I’m not in survival mode anymore, I am able to have perspective, and realize that, yeah, I’m disappointed, I wanted this to happen faster, but guess what, it’s not, and I have to lower my expectations. There’s a grief/rage process that goes with that, but once you reach some acceptance, it’s easier, and you can be kinder to yourself. There is nothing personal about this–it doesn’t mean you’re a failure, or a fuck up, or so damaged you can never heal–all it means is that it will take longer than you want and that’s disappointing, but it will happen.
I can totally relate to the experiences you are having…from the frustration of dealing with doctors who don’t understand (no one can understand unless they’ve personally been through it, in my opinion…how could they?), to being so stressed from drug withdrawal that I become abusive with strangers in a store, and all my loved ones, and to the frustration and deep, deep disappointment of having to go up on the meds when you’ve been working so hard to get off of them. Your journey hasn’t been in vain. You are healing. It’s just not going exactly on the timetable you would like.
The Buddhist stuff you are studying will help you with this disappointment….since all suffering comes from not being able to accept what is…when we rage against reality. You don’t have to like it, but if you work on accepting it, you will have some relief.
I really feel for you. And I know you will get through this. Try and do the kindest thing you can for yourself. If that’s temporarily upping your dose to give yourself a little relief, then so be it.
Cricket,
Is it Cherry Plum? I have some of that and that’s a very good idea! I believe it’s for explosive anger!! That is what I’m struggling with!
I will try some now. I’ll spike my water bottle with it before I go out.
Pat,
thanks so much for your encouragement. It helps so much to hear from people who have been in my shoes. I haven’t decided whether I will reinstate a small amount or not, but knowing how you were suffering and that you are now doing much better is a great relief to me. I will hold what you say close and if I decide to updose you will be my role model. thank you.
I wish I could patly say that this. too, shall pass, but it is so much more complicated than that or the tall, sparkling, moist coconut cake I am wishing you.
Have you ever tried Bach’s Flower Essences? What you describe is a lot of self-loathing and I found their stuff to help – I think it was black cherry. Plus Rescue Remedy.
I am Queen of Self-Loathing as well as Others-Loathing. During these times, I must alienate myself, not do something stupid like maintain a job.
Take care of yourself. I do not think this is a new character flaw. It is chemistry working itself out.
Hi Gianna,
Just a quick note to say that everyone that is sincerely committed to living without this crap in their bodies hates to updose and feels defeated in that. But you’re right, we DO tell each other to do it, and inside ourselves, we know when it’s the right thing to do. When I reinstated, I had to pretty much double my dose. It made me sick to do it, cause I thought I knew what that meant in terms of the length of w/d. I never would have suspected I’d still be here in benzoland four years later and not done! But I functioned. And I believe, more important than that, I calmed my cns down. I have a theory that the calmer you can keep your cns as you withdraw the drugs, the shorter your recovery time will be and the less damage done. I got to a place in my w/d too where I thought I’m almost done, just get it over with – I can take it. But I read some things and did some deep thinking, and remembered a lot of things my friend Helen told me. And in the case of benzos, at least, I really believe that the inability of the nervous system to attract GABA to the receptor sites is the main reason we feel so terrible. Maybe there are similar chemical effects from lamictal or other drugs you are tapering. In any case, trying to just kind of THROW ourselves through it seems to me to be destructive not only to our physical bodies and minds, but also to our emotions and consciousness.
Please don’t read this as me trying to tell you to updose – I wouldn’t presume to advise you on anything. I just wanted to say that if that is what you decide is right for you, don’t feel negative about it – let yourself get calm and even. In the end, you will beat this too. My two cents…
Love,
Pat