Well, I’m feeling like I need to clarify what motivated me to write the last post on this blog. It seems that because I used a party to illustrate my issue that people understood that to mean I was complaining about not being able to “party.” While it is true, I can no longer “party,” I don’t want to “party” anymore. I do want to be able to gather with groups of people and enjoy myself, however. This I have problems doing no matter how low key the environment is.
What I was really talking about is the chronic fatigue accompanied by an acute sensitivity to any kind of stimulation I face every day of my life. Too many people, too much stimulation. Sometimes one person is too much stimulation. While it’s true I may have always had traits of “The Highly Sensitive Person,” it is clear to me that the damage wrought by psycho-pharmaceuticals in the last twenty years and now the process of withdrawal from them is the main cause of what is essentially a neurological condition. My body and brain have been attacked and I hope I am in the process of healing.
I cannot do ORDINARY things that people well into their seventies can do and enjoy. I cannot go out and run errands for more than a couple of hours and even just those couple of hours do me in. The stimulation of driving and then being in public, chaotic environments like stores overwhelm me. I usually can’t be anywhere outside my home regardless of environment for more than a couple of hours.
Traveling is extremely difficult. I loved to travel. Long car trips or plane rides fuck with me now. I don’t sleep for several days after that kind of stimulation. Yes, it is stimulating to sit in a car or plane even when not driving.
I cannot go out in the evening at all without regretting it to some degree the next day regardless of what the activity is.
I can no longer exercise vigorously. As little as a year an a half ago, before starting my withdrawals in earnest I hiked for hours in the forested mountains where I live. That was the source of my greatest joy. I lived for those times quite literally. Now even a slow paced walk on a flat surface can do me in within a half an hour. This happened while being in superb shape. I did not stop because I was lazy leading to becoming out of shape. I was forced to stop because even in the great physical condition I was in it started to make me sick as my sensitivity to stimulation became more and more severe. And yes, exercise is stimulating–ever hear of runner’s high? I don’t get high anymore–I get burnt out instead and real damn quick.
It is important to note that this is normal for what I am going through. The online communities of those of us withdrawing from psychiatric medications speak of this problem all the time. It is frustrating for anyone of any age. As Mike comments in the comment section of the last post, people become so sensitive that earplugs and sunglasses become necessary. I use sunglasses indoors sometimes.
I realize my tone is somewhat defensive. I’m not pleased about that, but I wanted to communicate that I am not dealing with something that everyone naturally goes through. I am dealing with something that people who have been poisoned by psych meds naturally go through. I am not alone in this, but it is not normal. Unfortunately it makes me angry. I will do much better when I let go of the bitterness that I’ve adopted since realizing how psychiatry has fucked with my life.
I hold good faith that I will come through this stronger and that I will let go of my bitterness. But right now I’m in the process of mourning the loss of many things in my life that made me happy. I was very social and I was very active. My life has become diminished for the time being. I trust that much of this will be temporary even if a protracted temporary.
HSP,
I just want to add now that in general I do believe I’ll recover. Have you read “Kim’s Story” it’s at the top of the page on the right under “The Nuts and Bolts” It’s very inspiring. She went through everything we’ve gone through and she’s thriving now.
And yesterday I was seeing things very black and white. I do have occasional respites–time where the ugliness lifts for short times. It’s not that I feel good in general, but in spite of my exhaustion I manage to have a good time–see:
http://bipolarblast.blogspot.com/2007/06/different-shade-of-pink.html
Open this up in the full window to see the url. You can click on the title of the post on the main blog to see it.
You are doing wonderfully. Do you watch your diet? Do you supplement with anything. I know these things help me. I had to go off of them for two days for blood work and felt the difference.
I wonder how I held my head up too–before I started my withdrawal I was on 11 mg of Risperdal (normal max is 6 mg) 50 mg of Seroquel, 3 mg of Klonopin, 400 mg Lamictal (normal max dose 200 mg) And 200 mg of Zoloft.
I’m down to 3 mg of K, 1 1/4 mg of Risperdal, 225 mg of Lamictal. Off seroquel and off zoloft.
We’ll do it!
thanks so much for sharing here. You too are an inspiration to me. I’ve found many people through this blog that have done it and they are all so greatly appreciated. I don’t think I could continue this journey without people like you and Liz and Mike and thememoryartist sharing their stories. They are regular commenters but there are many many more people who give me faith and hope allowing me to trust that I will recover.
“I know you only have a benzo left to taper off of–how long did it take for you to get off all the other stuff?”
For 12 years, I was only (!) on benzodiazepines and antidepressants. I tried many different ADs, but I was always on one or another.
Then, shortly after 9/11, I was started on atypical antipsychotics, lithium, etc… in addition to the anxiolytics and antidepressants.
I started tapering in summer of 2004. First, I weaned myself off of 900 mg Trileptal. In spring of 2005, I tapered off 10 mg Lexapro. Summer 2005, I started with the last 75 mg of Seroquel (from 400 mg, I think, maybe more). Then, the 3.0 mg Klonopin (dry cut instead of water taper — big problem for me).
Next the crossover from 3.0 mg Xanax to Valium starting in September 2006. (Three mg of Xanax is equivalent to 60.0 mg of Valium)
Ten months later, I am only on 2.0 mg of Valium each evening. I plan to start the final 2.0 mg water taper this week.
Ugh. I have managed to keep a pretty good record of the correspondences between me and my pdoc, but I still have a lot of holes in my memory.
The benzos alone can cause major memory problems. I have seriously lost huge portions of my life due to these drugs.
How did I function on so many meds? How did I hold my head up?
Gianna, try not to get impatient. As long as it takes, who cares? With each decrease in meds, you are that much closer to freedom! It’s a monstrous journey, but so worth it.
PS: I don’t want to neglect to add that I was taking Fortamet and Vytorin for the prediabetes I got from Zyprexa. That sucked. I weaned off of that, too, in 2005.
“I know you only have a benzo left to taper off of–how long did it take for you to get off all the other stuff?”
For 12 years, I was only (!) on benzodiazepines and antidepressants. I tried many different ADs, but I was always on one or another.
Then, shortly after 9/11, I was started on atypical antipsychotics, lithium, etc… in addition to the anxiolytics and antidepressants.
I started tapering in summer of 2004. First, I weaned myself off of 900 mg Trileptal. In spring of 2005, I tapered off 10 mg Lexapro. Summer 2005, I started with the last 75 mg of Seroquel (from 400 mg, I think, maybe more). Then, the 3.0 mg Klonopin (dry cut instead of water taper — big problem for me).
Next the crossover from 3.0 mg Xanax to Valium starting in September 2006. (Three mg of Xanax is equivalent to 60.0 mg of Valium)
Ten months later, I am only on 2.0 mg of Valium each evening. I plan to start the final 2.0 mg water taper this week.
Ugh. I have managed to keep a pretty good record of the correspondences between me and my pdoc, but I still have a lot of holes in my memory.
The benzos alone can cause major memory problems. I have seriously lost huge portions of my life due to these drugs.
How did I function on so many meds? How did I hold my head up?
Gianna, try not to get impatient. As long as it takes, who cares? With each decrease in meds, you are that much closer to freedom! It’s a monstrous journey, but so worth it.
PS: I don’t want to neglect to add that I was taking Fortamet and Vytorin for the prediabetes I got from Zyprexa. That sucked. I weaned off of that, too, in 2005.
HSP,
thank you so much. I too could have written your response to me– It’s astonishing, isn’t it? But what a relief to know that for what we’ve been through we certainly are not unusual.
So glad you’ve come to peace with yourself. How far along in your journey off meds are you? I know you only have a benzo left to taper off of–how long did it take for you to get off all the other stuff?
I get so impatient with it taking years. I hope to come to peace with my healing process too.
I’m looking forward to reading Elaine Aron’s book.
Gianna,
Every single word you write here I could have written myself.
I understand the grieving process that’s overwhelmed you. You’re onto something quite profound when you say it’s not the “normal” slowing down. I’m 39, and I feel like I’m 99.
I agree. It’s (mostly) painful to move. Period. I wake up exhausted. I drag through my day.
I must take a shower this afternoon, and honestly, I dread it. I am so tired.
If I do one errand a day, I feel like a champion. If I brush my teeth, I’m thrilled. I am not really depressed (not like I was while on my bipolar cocktail), rather I am just beat. Broken. Destroyed physically.
It absolutely is the withdrawal from the meds. Absolutely. I’m 100% certain.
Taking a weekend trip sends me into Overstimulation Land in an instant. Like you said, just being a passenger in the car is exhausting.
I have zero social life now. Really, zero. I never leave the house, except for very short errands.
I used to work full time, come home, shower again, and go out till early in the morning.
My husband and family look at me and wonder how it’s possible for me to never leave the house, never get dressed.
The difference now is that I am not disgusted with myself for this very prolonged “down time.” I used to think of myself as a pathetic failure, a big time loser for not being able to work, hike, even meet new acquaintances for a coffee.
I just can’t commit. I can’t feel obligated to keep social dates.
I can’t even plan that I’ll get into “real” clothes.
But, today, after having read Elaine Aron’s (and others’) books, and after meeting with my life coach, I honor my healing period. I do have days when I can get dressed and make a couple errands in a row, but the fact that they are few and far between doesn’t deter me.
I will never take psychotropic meds again. Never.
I was labeled everything under the sun and given over 27 psychotropics meds. Nothing changed.
But, now I give myself a break. It’s okay (really) when I tell someone, “That won’t work for me, but this will…” I love who I am. I am saddened I let doctors try and medicate who I am away.
I am a HSP. I am resourceful, empathic, compassionate, creative, loyal….
I started my blog because I wanted to record my experiences of being wrongly labeled as mentally ill. I was told I wasn’t “normal” because I feel things so deeply. Of course I manifested panic attacks; I was trying to be a person society deemed “successful.”
I am so glad to have found you and your writing. Although I am at peace with my very slow healing, I do still wonder at times if this is it.
Does it get better? Well, being almost off every med is already better. I am less depressed, less anxious, less agitated, less hopeless.
But, even if this chronic lethargy doesn’t abate, I am still happier now than when I was simultaneously taking heavy duty meds like Seroquel, Trileptal, Lexapro, Klonopin, Atarax, and Xanax.
I’m so rambling here. I’m sorry. I just wanted you to know, I feel you. I hear you. I understand you.
You are not alone. We are not alone.
Stephany,
I really can’t speak for your experience but it seems like you were working out some of your answers while you were “thinking aloud.”
You were on Seroquel for a much shorter time than I was on neuroleptics (Seroquel included), but from what I’ve learned some people are damaged even after a very short period. (I don’t know exactly how long you were on it but if it was at least a couple of months or more I think the likelihood of neurological changes are high) You probably are healing from the time you spent on it. It would not surprise me at all. And it sounds like you’re feeling better all the time so that is good.
Everyone is different though, so really I would just look to your own experience and see what you think, which I think is what you are doing anyway.
Stephany,
I really can’t speak for your experience but it seems like you were working out some of your answers while you were “thinking aloud.”
You were on Seroquel for a much shorter time than I was on neuroleptics (Seroquel included), but from what I’ve learned some people are damaged even after a very short period. (I don’t know exactly how long you were on it but if it was at least a couple of months or more I think the likelihood of neurological changes are high) You probably are healing from the time you spent on it. It would not surprise me at all. And it sounds like you’re feeling better all the time so that is good.
Everyone is different though, so really I would just look to your own experience and see what you think, which I think is what you are doing anyway.
I have a question. Based on my self–before i was officially dx bipolar, i would be wound up from music, concerts, etc, take forever, to come down off of that. then there was the 5pm anxiety, “I cant think” syndrome I had, and what ive learned about myself is that ive been sensitive to stimuli like you talk about. Then, once i started taking psych meds, i could feel the opposite pull. like you describe [all the middle age and partying topic aside], tired easier, etc. especially since the removal of seroquel. i get what you are saying here, and was wondering if you think it is the med removal or do you think it could be symptomatic of bipolar? or both? just thinking outloud here,because i can relate to what you are saying, and most importantly since using and removing seroquel. the longer im off of it, the more energy is coming back to me, so maybe thats a good sign.
good discussion, thanks.
Oh yea, there is no other sensitivity quite like the sensory intolerance and fatigue that is caused from coming off these drugs…and unless one has been through it, they can not understand the impact it has on your entire life.
But, as you underlined, it is a temporary state of being, albeit protracted for sure.
As the 4th of July approaches, my neighbors have been shooting off bombs and fireworks for two weeks now. Not only do my poor fearless pups jump a foot every single night at exactly 6pm when someone lets off one of these bombs, but so do I. My startle response has never been more ‘on’ since going off the drugs. Good ‘ol hyper-arousal, don’t-cha-know. So, like you, not only do I wear sunglasses most of the time, but my earplugs are getting a big work out of their life! …especially with the fall out of the holiday. Whine..
It does begin to get better though. I can attest to this! So, I say ‘be righteous’ and go forth! .
thank you Keener! I missed you there for a while–it’s nice to see you out and about on the web again.
Hey Gianna
I hope writing that post has eased some of the anger. Better out than in!
I know exactly where you are coming from – I have to be so careful not to over-do it too – if I do tiredness and angry, muddled thoughts overwhelm me. I also feel frustrated at times when people try to ‘normalize’ it and find it hard to not feel anger when people say ‘we all feel like that sometimes’. Like you said it ain’t normal!
I try to live a live of balance – keep pushing myself so I don’t succumb to depression but also accepting that some times I just have to shut down and rejuvenate…
Of course this is all stuff you know already, but I just wanted to post a message of support to ya…
take care Keener