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Thread: Want to get off meds but struggling

  1. #1
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    Want to get off meds but struggling

    Hello everyone,

    I've been reading through the site for the last few weeks and am so impressed with the compassion and
    support provided here - thank you so much for being here to help people like me navigate through AD
    withdrawal.

    I had been trying to slowly taper Zoloft for several years only to get hit with major withdrawal issues - usually related to a stressful circumstance - and have to updose. Last year updosing didn't seem to help so out of desperation I switched from Zoloft to Celexa (and added 1 mg Klonopin which I had successfully tapered off of a few years prior). I have now been on Celexa since January (and still on 1 mg Klonopin), upped the dose 2.5 months ago to 35 mg. At the increased dose, am experiencing constant headache. I have been trying to stabilize on Celexa and have a few days here and there feeling fairly normal but aside from the headache have also been having quite a bit of depression/anhedonia/suicidal thoughts. I was trying to wait this out to see if my brain would adjust to the Celexa but because of the headache thought I'd try a small decrease of 2.5 mg a couple of nights ago. The headache only worsened so I went back up tonight to 35 mg. Am feeling quite defeated.

    I don't know if you will read this, Sheila, but I noticed in your introduction that you started to get headaches from Paxil. Did you headaches worsen with every decrease you made in your taper? I just don't see how I am ever going to taper off of this med. if the headaches are this bad all of the time. I would love to hear more about this particular symptom for you, how you managed, and how the pain level was as you decreased. I was so impressed reading your story and how much you went through - I am in complete awe that you got through all of that and have such a positive outlook. I wish I could say the same for me but at the moment I am really struggling.

  2. #2
    Founder Sheila's Avatar
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    Welcome, shel!

    I understand that you feel like you’re between a rock and a hard place. I don’t know your story, so just correct me if I’m wrong, but I’m wondering if maybe you are trying to get to normalcy or comfort, and are going to have to let go of that in order to get off these toxins. I’m wondering if maybe you’re going to have to embrace some degree of discomfort in order to taper.

    I can’t really remember what each taper did re the headaches. What I definitely remember was that each taper made my muscle tension worse. That was the limiting factor for me – I went as fast as the muscle tension would allow. And if I had it to do over, I would go slower. Now, as part of that extreme muscle tension from the back of my head to my legs, I know I got headaches, sometimes very bad ones. Plus, sinus congestion was a big factor. I occasionally threw up from headaches early on. That got slowly better.

    Thank you for your kind words about my positivity. I do work hard at that, but it has been a process. And I am also a firm believer in really expressing your pain, fear, rage, and despair to yourself and to someone else who can support you -- regularly! It’s a balancing act. I belief both are required. You have to say your worst feelings, and then you have to contain them and cultivate your ability to have faith and hope.

    So, for you, it might be that what would work best is an ultra-slow taper, kind of like grandmaD is doing. But with each drop, you would need support to tolerate a temporary, moderate worsening of your symptoms, and perhaps you would only get partial stabilization before you moved to the next drop. That might be the best, though not ideal, scenario.

    What do you think? Also, where are your headaches, and what do you think is causing them, and what, if anything, helps them?
    Meds free since June 2005.

    "An initiation into shamanic healing means a devaluation of all values, an overturning of the profane world, a peeling away of inveterate handed-down notions of the world, liberation from everything preconceived. For that reason, shamanism is closely connected with suffering. One must suffer the disintegration of one's own system of thought in order to perceive a new world in the higher space."
    -- Holger Kalweit

  3. #3
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    Thanks so much for your response, Sheila and for sharing what you remember about your own taper. I have been prone to headaches for most of my life. They are almost always located above my left eye, where my eyebrow is and/or in the left temple region. They actually had gotten a lot better until I started the tapering Zoloft and they started showing up again more regularly and maybe worse in terms of pain than I had remembered. This latest headache is constant and I believe definitely caused by Celexa as it didn't start until i increased the dose on the Celexa. Nothing really helps except when they get really bad I do use Imitrex but i try very hard not to take anything.

    I think the only way I am going to be able to approach tapering Celexa is by doing - as you say - an ultra-slow taper. I tried a slow taper of Zoloft and still couldn't get past a certain point so the only option is to go slower, especially as I am not exactly stable on this medication.

    I have considered what you said about comfort and I'm not sure- I feel like I've dealt with a lot of physical and emotional discomfort through this AD withdrawal process. And prior to that I have also dealt with pain. I think what gets me is when it doesn't change and just stays the same and I am not stabilizing - that is when I start getting fearful. With my Zoloft taper I hit a point last year where I was under a lot of stress and became highly anxious, not sleeping, not eating and my body would just not relax at all. I stuck that out for a few months but it just became worse so that is why I felt the need to try something else (hence, the switch to Celexa and going back on Klonopin - which also scares me but at the time I was in a very bad place and was trying to help myself). I am not sure if my lack of success in tapering these meds is me or if they have changed my body chemistry so much that it is not possible - maybe both? I am so confused at this point and scared. However, what you said about how to approach this taper is pretty much what I've been thinking too - I just hope I can do it. Thanks again, Sheila. I am so glad you are here!

  4. #4
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    I thought I'd write a little more about my psych med history to give everyone more of a background. I was prescribed Cymbalta during a very stressful period of my life in 2006. The stress I was experiencing was causing me to exhibit some signs of clinical depression. I stayed on Cymbalta for a little over 1 year and tapered quickly per my doctor's instructions (don't remember the specifics). Was fine for 4 months or so but then more stress occurred and I immediately experienced extreme anxiety/fear (especially in the mornings) difficulty sleeping, lack of appetite, etc. I now recognize this as withdrawal but then thought I was just "going crazy" so tried to go back on an AD - everything I tried made my symptoms much worse so eventually my provider put me on Klonopin and Zoloft. The combination worked to get the AD in my system and to calm down. After 4 months I tried to taper the Klonopin and experienced withdrawal - I suddenly put it together that what I had experienced in the prior months was also withdrawal. I slowly tapered off Klonopin and remained on 100 mg Zoloft. I eventually wanted to taper the Zoloft because of weight gain, low libido, and just an overall feeling of being unmotivated in life (but this might just be me, not sure). I tried several times to do a slow taper but never was able to get off of it. Eventually I tried a 5% taper and was doing ok until last spring I went through a stressful time and once again experienced full-on withdrawal symptoms during my taper- I tried to go back up which had always worked in the past but to no avail. I was in a very bad place - not sleeping or eating, suicidal thoughts, my body would just never calm down despite not sleeping - so went back on Klonopin 1 mg which helped and decided to switch the AD from Zoloft to Celexa. I switched fairly slowly over a 6 month time period and felt really good during this time - almost like myself before AD use. I finished the Zoloft in January. Mid-March I tried to taper a small amount of the Klonopin and immediately had terrible anxiety so went back up again. Then towards end of March/beginning of April, I was having more anxiety/depression so my provider and I thought maybe I needed more Celexa to help with these symptoms and to help with the Klonopin taper so I went up on the Celexa. Once I hit 30 mg, I started having a daily constant headache. I went up to 35 mg in the hopes that it might help with the headache (my sister had had an experience with Celexa where she had a headache but not at higher doses). Unfortunately the headache has remained plus I’ve anxiety and mostly depression - anhedonia and pervasive suicidal thoughts. I’ve lost a lot of weight as well as my appetite has diminished a lot. So basically I am not feeling well and on a high dose of Celexa. :(

  5. #5
    Founder Luc's Avatar
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    Hello, Shel! Welcome to IAWP.

    I truly believe that if you go the very very slow taper route, you'll be able to make it. The most difficult, from a psychological point of view, is to start it. Once you know you've come 10% of the way, then 20%, then 30%, you will be getting stronger, and you will start realizing that you're able to continue it until you're completely off of the drugs.

    As for headaches, I hadn't had those prior to the drugs, and even not that much when I was on them, but it got really bad in early WD, then started to improve as time passed.

    Stay strong!
    Keep walking. Just keep walking.

  6. #6
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    Thanks so much for your supportive post, Luc. I am really needing to hear that I can do this as it really is not feeling that way given I am already feeling badly/not stable. I wasn't able to accomplish tapering even when I was feeling stable and here I am now in this position. I don't really have a choice though since I am clearly having an adverse reaction to Celexa.

    Thanks again and I hope you are doing ok,
    Michele

  7. #7
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    Shel, so what are you on now? still on the benzo?

    personally (and I am no expert) the best way for you would be micro tapering but with LOOOOOONG holds in between to let your system ajust to the new levels.

    try to put what you are on in your sig and what you plan to taper first,

    my thoughts are with you hon. xx
    Put on citalopram July 2009 during a physical illness - didnt need it. 40mg
    went down to 20mg July 2010 CT in Jan 2012 - 2.5 years on.
    Tried to restart July 2012 due to 1 panic attack (never had one before - start of CT W/D) - adverse reaction
    Down to 1.5mg from the failed RI
    Now at 0.48 and trying to stabalize - been 6 weeks
    now have SEVERE anxiety, akathsia, feel like Im on acid 24/7 depression, D/P, signed off work. Scared of everything..please God let me heal from this

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    Thanks for message, iggy. I am on 35 mg Celexa and 1 mg Klonopin. I am planning to taper the Celexa first because it is causing a constant headache. I will add a sig soon to clarify my history and where I am at now.

    How are you doing today? My thoughts are with you too!

  9. #9
    Senior Member Moui's Avatar
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    Hi, fellow citalopramer.
    It's curious you said your headaches are around your left eye/temple area. My pain episodes (headache/migraine and something else) have always had that element in them. Odd pressure, scooping sensation around left eye/temple area, felt like an invisible spoon digging my eyeball out.. not exactly, but close enough.

    I try not to view your experience through mine. For me going down in dose ended that pain. You said the quick drop made it worse. And you mentioned this headache proneness.. I've only had this happen while on citalopram.
    So it started when you upped the dose and got worse again when you tried to drop. To me it sounds like your cns just might not enjoy all the changes. Drugs, doses.. So parroting the others.
    Long slow tapers and as few switches as possible seems to work the best often. In some ways this reminds me a bit of Aberdeen from PP.. If I remember right she went c/t paxil into WD - tried different drugs, ended up staying on something not helpful (escitalopram or citalopram?) and then just riding it out and slowly tapering. She seems to be doing better now, still tapering but lower dose. Idk, it might not be the same, just came to mind.
    Welcome and I wish you much healing.
    Acceptance. Time. Habit.

  10. #10
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    Hi Moui,

    Thanks for reading and posting in my journal! I appreciate your thoughts/insights. So sorry you too have dealt with this awful headache pain but so happy to hear that going down in dose helped for you - that is wonderful news! Indeed, my CNS is extremely sensitive - I get headaches when increasing medication as well as decreasing. I clearly just need to get off of these medications but I just have not been able to do it. I have read Aberdeen's story on PP and it does sound similar to mine in someways. It is encouraging she is doing better now and is tapering. I think because I am so very sensitive I have to try a micro-taper, even smaller than my previous attempts which were pretty slow - I tried 10% and then 5% both didn't work for me.

    Thank you for the welcome and I wish you much healing as well!
    2006 Rx'd Cymbalta for approx 1 yr. WD after 4 mos - didn't realize was WD,took Zoloft and Klonopin; tapered K. Spring 2012 experienced major WD symptoms while tapering Zoloft; tried to updose but no relief, back on K 1 mg. Switched over 5-6 mos from Zoloft to Citalopram. Finished Zoloft 1/13; now on Citalopram 35 mg and 1 mg Klonopin. Started to experience withdrawal symptoms from switch (?) approx. 3 months after finished Zoloft (4/13). Now at 35 mg and hoping to start slow taper

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