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Bellabear: I'm a confused Skittles bag of diagnoses, symptoms and drugs


bellabear

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Hello all,

 

I was so thrilled to find this website. I, like many of you, feel very alone in my withdrawal; I often find myself wondering if I am convincing myself I am sick- and, consequently, feeling sick. I am 24 years old and have still not finished my BA (in psychology) and am currently living at home with my parents, not working. This is a source of much embarrassment for me; it makes me feel useless and like a drain on my parents. (Which I am, emotionally and monetarily.)

 

So, here's my story. I wish I could limit it to psychiatric diagnoses, as that is what this site is about, but I find that my physical diagnoses are far too intertwined to keep from sharing them.

 

WARNING: This is a super long, tedious story. I don't expect the typical browsing person to read this. However, if you have had any similar diagnoses/symptoms/drug doses as me, I think it might (hopefully!) be at least a little helpful to read the full history.

 

-At 13 years old, I went from a tiny school to a huge school without knowing anyone. I developed "school phobia" and was immediately prescribed a paxil and ativan cocktail, though it did not help. That same year, I was also diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder which causes chronic pain. The kicker is, it's invisible. I look completely fine, so I am often presumed by others to be lazy.

 

-At 14, I went to a new school and, due to a devastating event that happened to my best friend, became suicidal. My school phobia came back. I was put on to 200mg Zoloft, which indeed curbed the anxiety, depression, and suicidal ideology.

 

-The Zoloft helped until I was about 18 years old and developed severe affective blunting. I was weaned off of the zoloft over a period of about a month, and don't remember many problems during the tapering. However, as soon as I completely ended the zoloft I developed extreme anxiety, depression, insomnia, and OCD tendencies.

 

-Within five days of ending the zoloft, my psychiatrist put me onto 20mg celexa, with klonopin to use on the side until the celexa kicked in. The celexa helped a little, but not satisfactorily. I was eventually upped to 60mg, which seemed to do the trick. However, I developed the sexual side effects, and so was put onto 300 Wellbutrin XL, which helped a little bit. All of these medication changes happened over about probably only 2 years. I was also given 25mg Adderall RX to help with my ADHD. 

 

-I had been on this cocktail until about 21, at which point my doctor raised my Wellbutrin XL to 450 in an attempt to ameliorate my occasional drowsiness. This helped. 

 

-Between 21 and 24 years old, I progressively developed severe exhaustion. However, it never occured to me that this could be a side effect of the celexa- it is very comon for people with ehlers danlos to have extreme exhaustion. However, by this February, I was sleeping 12-15 hours a day; I could not do any of my school work because I was always tired. My doctor finally stopped blaming "sleep hygeine" and got me a sleep study. 

 

-My March 2013 sleep study was eye opening. In 210 minutes of sleep, I had over 150 "arousals" (waking up, but not consciously). I also did not enter REM. About 1/3 of the arousals were due to apnea (which wasn't enough for insurance to cover a CPAP machine), 1/3 was due to restless leg syndrome (which was thus considered mild) and 1/3 were of unknown origin. The neurologist believed that most likely my underlying sleep problem was narcolepsy, but to officially diagnose narcolepsy a >24hour and very expensive study has to be done. Also, since narcolepsy is a REM disorder in which REM happens too quickly and SSRI's suppress REM sleep, it would be impossible to make an acurate diagnosis. So, they tried putting me on gabapentin, to see if that would at least help with the restless leg symptoms. This helped a lot. I was suddenly able to sleep about 9 hours and feel relatively refreshed. However, my tolerance grew very quickly, and by the time I called my doctor for a refill, she said that she believed it was pointless to keep trying the gabapentin because my tolerance would just keep growing and growing. So, she said she still thought I had narcolepsy, but said she couldn't treat me for it (with provigil) because provigil is wildly expensive and my insurance wouldn't cover it unless I had an official narcolepsy diagnosis. My only option to really figure out what my sleep issues were was to quit my SSRI.

 

-I began decreasing my SSRI's in the following manner (as directed by my new, medication-adverse shrink):

Weeks 1-2: decreased to 50mg celexa. Bouts of irritability came and went.

Week 3: decreased to 40mg celexa. Again, major irritability- worse than the previous weeks.

Weeks 4-5: decreased to 30mg celexa. Started getting headaches and bouts of depression on top of the irritability.

Weeks 6-7: decreased to 20mg celexa. Not much diference in withdrawal symptoms between the 30 and 20mg doses. 

Weeks 8-10: decreased to 10mg celexa. Similar withdrawal symptoms, though average night of sleep went from 12-13 hours to 14-15 hours. 

Weeks 11-12: decreased to 5mg celexa. Not as much irritability anymore, but sleep still got progressively worse, and depression "attacks" became more common and severe.

Week 13: decreased to 0mg. Constant headache.

Week 14: Headache gone, all-over muscle soreness. Started crying at anything, even without feeling sad.

Week 14-15: MAJOR nausea. Given ondancetron, helped for weeks 15-16, though gave me constipation. I ended up not having a BM for 10 days. Same crying thing during this time.

Week 16: Nausea came back, depression was worse than ever. Mental confusion started to bother me as well. Crying jags.

Week 17: Same as week 16, though  I began to experience anhedonia as well. More crying jags, though not as common as they had been.

Week 18 (now): Nausea worse than ever. Hypoglycemia because I cannot eat enough. Still, anhedonia. Crying jags decreased a little. Ocassional headaches. ONLY good side: I seem to be getting not quite as tired as I had been.

 

****Note: I am still taking 400 Wellbutrin XL

 

-Next week I am getting my sleep study, so we will see if I really have narcolepsy. Hopefully I can get back on some kind of psychotropic drug that won't suppress REM sleep. I think that my depression is just too ingrained and chemical for me to combat it without some prescription help. I have tried meditation, psychotherapy, and other stuff and I just can't seem to make any progress without the drugs. 

 

Thanks for reading!! 

 

P.S. Has anyone heard of being prescribed as high a dosage of celexa as me, for a period of 6 years? Do you think this is why my withdrawal is so severe?

Edited by Petu
Added member name to title

2007-2010 Celexa 60mg and 300 Wellbutrin XL

2010-2013 Still celexa 60mg, Wellbutrin XL upped to 450mg

Currently dealing with withdrawal from celexa. 

Co-diagnoses/possible diagnoses: Ehlers Danlos Sydronme, Narcolepsy, Idiopathic Hypersomnia, Hypothyroidism, ADHD, OCD, Major Depressive Disorder since age 13. On SSRI's nearly continuously since age 13.

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  • Moderator Emeritus

Hi Bellabear,

Welcome to our forum and thank you for posting an introduction.

 

I did read your post, twice actually.  You certainly have been through a very rough ordeal and I'm sorry you are suffering at the moment.  Its true, you have a complex history, so that makes it difficult to say for certain if withdrawing from Celexa is the only cause of your symptoms.  But from what I understand, you were on a high dose, the FDA recommends no more than 40mg.  You have tapered very fast, we recommend no more than a 10% decrease every 4 weeks.

 

You could reinstate a small amount and see if that reduces your symptoms, perhaps 2.5mg.  If you can stabilize on that dose, which may take several weeks, then you could begin a slower taper.

 

Tips for safely coming off Celexa are here:

 

http://survivingantidepressants.org/index.php?/topic/2023-tips-for-tapering-off-celexa-citalopram/?hl=celexa

 

Are you still taking Adderall?

 

I'm glad you found us, this is a very friendly, supportive site, others should be along soon with more help.

 

Petu.

 

 

 

 

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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  • Moderator Emeritus

Hi Bellabear, I read your intro too and it actually made me cry, I so feel for you being given all those drugs so young  :angry:

 

I'm glad you came here, it is by far the best place to be for advice on tapering and withdrawal. Please browse the forums, 

you will not feel so alone when you read others' experiences too and we are all with you. Many will read your intro and posts

but not comment and that is what helps us all, reading how others are coping but not always able to respond. You can be 

assured though that every one of us will be rooting for you and many praying for you. 

 

I agree with Petu that it might be best to reinstate a little and then taper slowly.

These drugs can make you very, very sick and withdrawal also makes people sick but from my own experience a slow 

taper is the very best way to go. I felt a tiny bit better after each drop then one day realised I was doing things I hadn't

done for years and was actually FEELING emotions again. I stopped too soon and had to reinstate but have now

stabilised and feeling fine again. I still have a little way to go but the light at the end of the tunnel is getting brighter by the day. 

 

It will for you too, please keep us updated with your progress, I really hope you can find some relief very soon.

**I am not a medical professional, if in doubt please consult a doctor with withdrawal knowledge.

 

 

Different drugs occasionally (mostly benzos) 1976 - 1981 (no problem)

1993 - 2002 in and out of hospital. every type of drug + ECT. Staring with seroxat

2002  effexor. 

Tapered  March 2012 to March 2013, ending with 5 beads.

Withdrawal April 2013 . Reinstated 5 beads reduced to 4 beads May 2013

Restarted taper  Nov 2013  

OFF EFFEXOR Feb 2015    :D 

Tapered atenolol and omeprazole Dec 2013 - May 2014

 

Tapering tramadol, Feb 2015 100mg , March 2015 50mg  

 July 2017 30mg.  May 15 2018 25mg

Taking fish oil, magnesium, B12, folic acid, bilberry eyebright for eye pressure. 

 

My story http://survivingantidepressants.org/index.php?/topic/4199-hello-mammap-checking-in/page-33

 

Lesson learned, slow down taper at lower doses. Taper no more than 10% of CURRENT dose if possible

 

 

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  • Moderator Emeritus

Hi bellabear,

 

Welcome to the forum! I'm sorry you've been through so much! I'm glad you've joined us, you'll get lots of support and great advice.

 

I agree with Petu and mammP, you may find relief by reinstating a small dose of Celexa. It is available as a liquid in US but I'm not sure about there. Some of us make our own liquid, here is a link for that:

 

http://survivingantidepressants.org/index.php?/topic/2693-how-to-make-a-liquid-from-tablets-or-capsules/

 

I know a 40 year old woman that takes 80mg Celexa and has for several years. I took 40 mg for three years and stopped CT to switch to Wellbutrin and had no problem. Certain drugs are just harder for different people to discontinue. Another person could take Celexa for a couple of weeks and have problems stopping.

 

Risperdal has been the devil to me but I've heard and know others that had no WD stopping it. Unfortunately, we can't know in advance what will cause WD, or not. That's why we strongly advise a very slow, conservative taper.

 

Thank you for sharing your story with us!

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Wow, thanks so much for the quick replies, guys. Unfortunately, I cannot reinstate the Celexa, at least until I finish the sleep study. Until then, I at the mercy of only partially helpful homeopathic remedies.

2007-2010 Celexa 60mg and 300 Wellbutrin XL

2010-2013 Still celexa 60mg, Wellbutrin XL upped to 450mg

Currently dealing with withdrawal from celexa. 

Co-diagnoses/possible diagnoses: Ehlers Danlos Sydronme, Narcolepsy, Idiopathic Hypersomnia, Hypothyroidism, ADHD, OCD, Major Depressive Disorder since age 13. On SSRI's nearly continuously since age 13.

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  • Administrator

Welcome, bellabear.

 

Antidepressants do indeed have a destructive effect on the sleep cycle. Wouldn't it be interesting if it turned out your long history of antidepressants was responsible for your sleep and pain problems?

 

One cause of restless legs is low magnesium levels. This is relatively easy to fix. Magnesium also reduces anxiety. Many people with withdrawal syndrome do do well with fish oil and magnesium supplements, seehttp://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

 

When is your sleep study going to take place? If you have withdrawal insomnia, which so many of us do, the sleep study is going to be misleading.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I'm so so sorry you are suffering so bad and that you are taking all those medications :(

I'm however very interested about your sleep study. I have also developed bad hypersomnia on antidepressants and it's totally ruining my life. I got an idea from you to try to get sleep study as well. I will look into this.

in 2002- 0,5 tablet cipramil for half a year, ended it uneventfully. in 2006 - citalopram for half a year, ended in horrific state, ditched the drugs CT. 2007-2008 not feeling well but drug free. in 2008 prozac 20mg + quetiapine 25mg. 2009 tried to stop, ended up in hole after couple of months, started zoloft. 2009-2011 zoloft 50mg. went to 25mg in 2011 summer, it resulted in half a year horrible suffering. reinstated, changed drugs, nothing happened. by 2012 beginning suddenly felt great and CT meds. after 4 months came suddenly most horrible human suffering that's possible. was started on prozac and questiapine. started tapering slowly, GFCF diet and Hardy Nutritionals vitamins in 2013 summer. 

current medications: 1) fluoxetine and quetiapine since Aug 2012; 2) Daily Essential Nutrients by Hardy Nutritionals 7 capsules / since May 2013 + omega3; 3) Gluten-free-casein-free diet since june 2013

 

Started withdrawing slowly since april 2013. Mostly around 10% cuts. 

April'13 - March'14: fluoxetine 40mg -> 19,5mg; quetiapine 50mg -> 40mg
April'14-March'15: fluoxetine 19,5mg -> 14,4mg; quetiapine 40mg -> 22mg

April'15-March'16: fluoxetine 14,4mg -> 7,4mg; quetiapine 22mg -> 15mg

April'16-March'17: fluoxetine 7,4mg -> 5,0mg; quetiapine 15mg -> 7,25mg

April'17-March'18: fluoxetine 5,0mg -> 4,0mg; quetiapine 7,25mg -> 0 (as of 1st Feb 2018)!!!!

April´18-March´19: fluoxetine 4,0mg - > 2,3mg. Jumped off fluoxetine 1,4mg due to pregnancy in July 2019. Oct 2019 severe withdrawal syndrome started.

Took mistakenly a complex for hormonal support that included pregnenolone dec2019-april2020. Stopped it april 2020 and immediately severe akathisia started. Have had life threatening akathisia since, 100% disabled, suicidal, very hard to hold on. 

 

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