I’m sick

In so many ways it’s not even funny. This is going to be a rant. Because I fucking sick of being sick. I have loads and loads of faith that I will get better in time, I really do, but in the meantime I have lots of days and moments like today. I’m weak, tired, sick to my stomach, can’t get off the couch, am noise and light sensitive to the point that listening to a voice irritates me—yeah that means I can’t stand being on the phone or watching a movie. AND I’M BORED because I can do virtually nothing. I try to meditate a lot. But right now I’m frustrated. And I just feel like being frustrated, hence the dumping right now.

Since I got off the Risperdal the second time around I’ve not been able to function—it’s NOT a mental thing. It’s physical. I imagine I was having Risperdal withdrawal symptoms from the first time around, but the doc moved me so fast into withdrawing the rest of the Lamictal and Klonopin that I never got to feel this. I feel like shit. Plain and simple. It’s probably compounded by Lamictal withdrawal too. I did cut a whole lot of that out too. That doc moved me so damn fast everything is confused now and I simply don’t know what’s what.

I’m angry at her. She hasn’t even bothered to see how I’m doing or look at my blog. I’ve said nothing bad about her so far because I know she was well intended, but to drive me close to death and then never even bother checking in really pisses me off. And yeah, that last sleepless night, as I began to lose my marbles from sleep deprivation and cold-turkey withdrawal, I did think I was going to die. Was it paranoia? Maybe, but had I not followed my gut and gotten care from someone else there is no doubt in my mind I would have gone completely insane from sleep deprivation and severe withdrawal symptoms. At best I would have ended up in a psych ward when my husband could no longer stay up with me around the clock and my spirit would have died. Psych wards kill. I would not have gotten back up, as I have and recommitted to this journey. Do you know the doctor that was supervising my withdrawal had me caved in the minute I decided to take emergency meds! She had the gall to say on the phone something to the effect of, “well, if you’ve decided to go back on meds” as though it were a permanent decision….She obviously had no idea who she was dealing with, how stubborn I am, and how far I have come. I found it incredibly arrogant of her to assume because she failed me I would then fail too.

No. I’m making it. I’m going to survive and be better for it.

Thank god, I actually do have a kind, warm, traditional psychiatrist who saved my ass and recognized it was just a setback and told me I could be off the emergency meds in a matter of days which ended up being true. Had I been hospitalized you can be sure that is not what I would have been told. They would have told me it was my underlying disease and I was stupid to have thought I could ever be off meds. My traditional doc who saved me knows me well enough now to recognize it has indeed been the meds making me sick. Just for clarities sake—he is NOT the doc who put me on all these meds. He inherited me and was always horrified at the amount of meds I was on. He has also been with me 100% of this journey, letting me find my way and being willing to learn from me—allowing my self-determination. NOT ALL TRADITIONAL PSYCHIATRISTS ARE EVIL, contrary to what so many of you out there like to believe.

Then there is my menstrual cycle which amounts to a two week nightmare every damn month—everytime I breath a sigh of relief because I’m feeling better, I ovulate again. I’m also in the middle of that right now, my period being due on Wednesday. In a couple of days I will have 48 hours of excruciating pain caused by endometriosis. I’ve already been in intermittent pain since Friday. My cycle alone, first with horrible PMS and then ending with horrible physical pain, without the withdrawal would be enough to make some people just say fuck it all. But I won’t. No. I. Won’t.

I keep on plugging on for some godforsaken reason that is unclear to me. Somewhere deep inside I really do believe I will find health one day. I don’t know why or how I feel this way.

I started with a acupuncturist a couple of weeks ago to help with the endometriosis and PMS. I’ve had several friends respond to Chinese Medicine for hormonal problems very well. She is a gynecological Chinese Medicine Doctor. She seems to really get how seriously ill I am and since Chinese Medicine is in a very real sense holistic medicine, I hope that she will help with my withdrawal as well. She is starting very very gently. She talks about my chi not being able to handle a typical aggressive acupuncture and herbal attack on the endometriosis. That made me feel safe with her. She gets how sick I am. It also means I won’t be healing from the endo anytime soon because the crisis the rest of my body is in determines that she can’t go after the endometriosis right now. So intense physical pain will continue to be part of my reality for a few days a month.

I’m having hormonal testing done too, elsewhere, for the first time. I have someone who can read my results who understands psych meds and the potential dangers of hormone replacement therapy (even with bio-identical hormones) when someone has psych med damage. There may be other supplements I can take that are gentler than Chinese Herbs that the Chinese Doc does not recommend in my condition. So slowly, I move onward. While feeling shitty and angry today, I move forward.

My period is due Wednesday. If it comes on time I should feel a whole lot better by Friday or Saturday. In fact my whole world may take on a new cast. I’m hoping even the weakness will pass, though I really don’t know what to make of that. Not even being able to walk more than a couple of minutes. But historically, since this whole withdrawal nightmare has begun, it has come and gone. I have days at a time sometimes where my energy is restored and I’m  always at my worst when I’m premenstrual. Yes, right now I’m pretty much at the peak of that shit…

Anyway, I still have good people helping me. I have a woman who has been withdrawing people from psych meds for over 20 years I consult with—she really has been with me this whole journey in varying ways. I have my neuro-feedback doc who is a wondrous and loving man who supports me completely and has seen others through similar journeys. I have my new acupuncturist who seems gentle, kind and loving and who seems to get my delicate nature. And I still have my warm and loving traditional psychiatrist who prescribes what I need and is always willing to learn from me and also gives invaluable advice at times.

So remember. I have a team of professionals and all my friends and family behind me too. It’s important to have support.

Hopefully I’ll be reporting from the other side of the menstrual cycle soon with better news…but damn this yo-yo is a pain in the ass.

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

24 Responses

  1. ((((Gianna))))

    I am so sorry for all of your frustration. I know this has been such a wild roller coaster ride for you and not a fun one! You are right – you are strong and determined and you will get through this and get off the meds. I wish I could do more than say I am here for you. You are in my thoughts a lot and I am hoping that this road becomes easier very soon.

    You have been such a strong, wonderful support for me and so many others. You deserve to find health, happiness and peace for yourself.

    Many hugs,
    Tamara

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  2. Pat

    Hi G,

    I’m thinking of you and hoping you feel better very soon. I am praying and hoping so much that complete recoveries are in the future for you and me! Keep a part of your mind focused on the acupuncture. I am a huge believer in acupuncture, and had used an acupuncturist before benzo w/d for pain and other issues. However, in the latter third of my w/d, I got a new acupunturist, also a womens’ issue specialist, who was loving and gentle and who really listened. I spent many hours on her table (and lotso cash), but in the end, I really began to realize that the treatments were not helping me, and maybe even stimulating me a bit too much. After some months of treatment, I fell into a pattern where I would almost completely fall asleep during the treatment and then before the time was up, jerk awake and be very anxious. Of course, I told the practitioner about this, but she didn’t seem to be able to correct it. And I started feeling as though I actually slept worse on acupuncture day. I don’t mean to discourage you though, because I realize that different things help different people and at different times in your journey, different things work or don’t work, you know? But just keep a watchful eye on your treatment, k?
    Hugs,
    Pat

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  3. Gianna,

    I understand about being sick. It’s OK. PMS sucks too, I just got my monthly visit from Auntie Flo and have spent half the day doubled up in pain in the bathroom.

    I wish I could visit you and bring over my mom’s chicken soup with matzoh balls. it is so good and wonderful, you would feel better.

    I would love to try the acupuncture. Will look into it.

    Take care Gianna, and snuggle with those kitties, oh wonderful cat woman thou art.

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  4. K

    That’s one thing I am not looking forward too. I just stopped taking birth control (I was on it to control hormonal issues such as horrible bleeding, cramps etc). I decided once and for all I am DONE with anything relating to pharmaceutical companies. I just started taking evening primrose oil, I will let you know in a month if that does any good. Usually the only thing that makes me feel better is to bitch. Plain and simple. Too bad for anyone around me.

    Do you like to read? Maybe a trashy novel, hot water bottle, blanket and the couch? Lucky for me, when I do that I have a dog and two cats who will keep me company but I don’t have to talk to when I am like that. My husband has learned to stay away.

    I wish I could do or say something to make you feel better. How awful is it to think that we spend half our adult lives like this (Its a bother for 2 weeks for me as well).

    Hope you feel better soon!

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  5. I had the horrendous PMDD problems for most of my life. I hope it passes quickly for you Gianna. I’m impressed with the way you hang in there and keep going no matter what. Good for you!

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  6. Gianna,
    So sorry to hear this but I know what it’s like. When you were feeling so positive about your Orthomolecular doctor, I didn’t want to tell what a terrible charlatan I saw in the same field. Nor did I want to tell you how my doctor of integrative medicine deserted me during my depressions.

    Ultimately, it was my psychiatrist who came through with drugs, although unlike yours he never thought I could truly get well. So, I had to do this entirely on my own…with only my mother and husband for support.

    At the time, I didn’t have a blog and didn’t know anyone else who was bipolar and withdrawing from drugs. I kept on saying to myself, “I will get through this because I love my son too much to leave him”

    I dearly love my husband and I dearly loved my mother, but there was a point when even that love didn’t seem enough to experience one more day of pain and suffering.

    So, I kept on holding this Gerber’s baby food cap with a childhood picture of my son in my hand (he’d made it as a present to me in preschool), and vowing that I’d never leave him…and even still…sometimes it was so difficult to continue that I’m still amazed I had the strength.

    So, know that my thoughts are with you. I know you’re going to survive this–even flourish–even though it may not feel that way now.

    Love from Los Angeles!

    Susan

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  7. Sally

    Gianna, as someone who had no clue back when I took and then stopped taking ssri’s and an snri, not to mention benzos, that some of the stuff I went through might be due to withdrawal, I applaud you and I’m sorry you’re suffering. I’m behind you and my good thoughts are with you.

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  8. Sherry

    Gianna,
    Just stopped by to say hello. Sorry to hear you’re feeling so sucky. It does sound as if your hormones should be changing positions in a few days, which I sincerely hope will relieve some of this.

    I had a friend years ago who *every single* month would go through the darkest of depressions. She knew it was a hormone drop, knew it always happened four days before her period. But, as you’ve probably noticed, when you’re in the thick of it, it’s almost impossible to remember little factoids like that. That’s when the support network *you’ve* built becomes so important. Even though you’re feeling crappy right now, you are drawing on your own work when you reach out to the people you’ve allowed in your life.

    Best wishes for the next stage of your recovery.
    Sherry (who really doesn’t miss that monthly tango)

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  9. Gianna–
    So sorry you’re feeling so rotten…big hugs to you, and I hope things turn around soon. Hug your kitties, and take care of yourself…
    Love,
    Jazz

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  10. Gianna,
    Hope your tomorrow goes quickly. I can relate to shades of what you experience, almost symptom by symptom, but I admire you for keeping going at the levels you endure.

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  11. David

    Ooooh, sounds like you found a really good, intuitive acupuncturist. I have high hopes for you with that treatment … when it works, with a sensitive practitioner, it’s amazing, and I too have many female friends who have found acupuncture to be an amazing intervention for everything from painful menstruation to infertility.

    I hope you feel better soon … despite the arrogance and dismissive attitude of your original doc, it sounds like you have other excellent support, which is reassuring to this community that cares about you. But I agree with you that your original doc needs a swift kick where it will do her the most good. Very disappointing … it would be different if she would admit her error, rather than taking such a rigid stance.

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  12. Ana

    “it’s NOT a mental thing. It’s physical.”

    Keep it in your mind! I’m very sorry you’re going to all of this.
    I’ve been there as you already know from my comment of Philip.
    It’s hell and I’m glad you’re having people to support you.
    I did it all alone and it was hard having to repeat to myself “It’s withdrawal, it’s withdrawal…” when suicide ideation arrived.
    The first time I withdrew was from 7 drugs with the “help” of a psychiatrist that did not “believe” in withdrawal symptoms. It was all “in my head an psychological”.
    That’s why when I’ve spend 18 months withdrawing the Effexor she put me into I did it all by myself.
    Take care Gianna!
    It is PHYSICAL! It’s PHYSICAL… it’s withdrawal… it’s withdrawal.
    I’m not very sure if I would withdraw clonazepam at the same time I was withdrawing another drug.
    Clonazepam is hard to withdraw. It seems like a harmless benzo but it’s not.
    It’s very difficult to withdraw. I think it was Bruce Levine who once said it’s harder to withdraw clonazepam than opiates.
    It’s amazing that physicians are not of great help at the time we need them most.
    They still doesn’t understand how hard it is.
    It was very kind of you to ask me to visit your blog.
    But after my experiences I’m so tired!
    If I pronounce the word withdrawal I feel like crying.
    Now I’m feeling fine. For a long time I don’t feel fine like these days.
    I want to forget a little about withdrawal hell and that I have to take Effexor/Seroquel and clonazepam because of the withdrawal hell.
    When I’ve finished the 18 months of Efffexor withdrawal – the last 35 mg were the hardest and now I see that I should have been on this dose for months – I felt terrible and even had to have people taking care of me for 1 month.
    So I went back to Effexor.
    Will I take it for life? Will I take Seroquel and clonazepam for life?
    I don’t know. But now I have to have some peace of mind.
    So, go s-l-o-w-l-y.
    Give your body chance to adjust. Take care when you reach the last dose and only withdraw the last piece when you feel you are really fine.
    That’s one of the many things I’ve learned.
    I withdrew Paxil, Neurontim, Seroquel, Topomax, Klonopim, Lamictal and Donaren all together with the help of that woman.
    She put me on Effexor before I’ve reached the end of the process because she didn’t believe that I was crying and in a emotional roller-coaster due to withdrawal.
    “-It’s psychological! Come to my office and I’ll prove it to you.”
    I know she never had any patient on Topomax. When this drug was launched the psychiatrist I was seeing added it to my cocktail.
    God knows why.
    I felt like crying while withdrawing this thing. But it did not came from my heart. I could feel it was withdrawal. When I took the dose the crying went away.
    Why don’t they listen to us? Worse: they don’t trust us!
    Gosh! I wrote a lot!
    You’ll be on my prayers.
    Eat healthy!

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  13. I just found your website and this post, I hope I’m not too late, but I have to tell you:

    Withdrawal takes time.

    And I don’t mean time to taper off, I mean time to recover. I personally quit taking three medications cold turkey, and after 3-4 months felt like my old self again. It was absolute hell, and it’s made worse by how each drug affects you differently, but just hang in there, avoid going back on as much as you can, and you will make it through!

    I was taking 10mg Lexapro, 250mg Lamictal, 20mg Zyprexa and an occasional Ativan and for a few weeks before all of this I was prescribed Abilify. The abilify was probably what made me want to quit everything. I was sure if I kept taking this poison that I would either do some serious harm or I would die. Nasty side effects…

    Withdrawal included the following: 3 months of diarrhea, heart palpitations consistently for 4 months, hot flashes, cold flashes, insomnia, paranoia, anxiety, high blood pressure, upset stomach and complete loss of appetite, I lost about 15+ pounds in the first month, and by the 4th month I finally was kicking the SSRI withdrawal brain zaps.

    I did this all with the help of AA (alcoholics anonymous) believe it or not. So if you are having a tough time, and you don’t ever want to look back, try going to a few AA meetings. They are very accepting and super great about withdrawal. Heck if you thought it was bad wait till you meet someone who has the DT’s. :T

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  14. Gianna,

    Totally, you are not kidding. I get you on the suicide thing, the part that landed me in the hospital was due to my desire to go cold and then three weeks later I attempted suicide by way of med OD. I would NEVER recommend it, not even to my worst enemy. But once you are off them, withdrawals or no withdrawals, it makes it even worse to go back on just to do a legitimate taper. It just made more sense to me at that point to buckle down and weather the shit storm. It was a category V for sure…

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  15. Hi Gianna,

    Keep on girl.The rant always good for the soul,akind of prayer.I’m “flustrated myself on the lttle bit i’m on”,the good is knowing that eventually it will be mind over matter.

    Bev

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  16. Masuda

    Hi there, My friend Rachel, whose blog you go to said you and I had somethings in common. 🙂

    I believe some of the newer theories..perhaps you have read …that these drugs actually have an anti inflammatory response as well as being immune suppressant. Other doctors insist that biochemical brain disorders are actually an inflammatory conditions.

    I have been on Risperidal before as well as Lithium and Lamictal.. I am now off of Risperdal and down to 450 mg of lithium and 75 mg of Lamictal..

    One of the positive side effects I have notices of one or both of these drugs besides mood stabilizing is that I rarely get sick anymore. I always used to get sick..I don’t have asthma..or allergies and I used to get bronchitis and serious respitory illness. I do notice getting slightly ill when I cut back even very very slowly.

    that is something I would miss if I continue to go down off of these meds. I have done it over a 5 year period..and anyone saying you should go fast is not worth going to..;)

    For mood stuff and withdrawl besides 1500 mg of Taurine on an empty stomach with ample b and c vitamins..(I use emergen c) I have been taking the lithium orotate nasal spray …with some GABA in it..It has been great…

    Good Luck, and write me if you need any more info on Aminos…or Vitamins..

    Hope you have gotten your blood tested for Histamine levels..do a fasting draw..and then you can tailor your nutrition from the results..whether too high or too low.

    Peace,

    Masuda…

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