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Hi everyone, I am Horus


Horus

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Hello,

Happy to find this group. My story is long and complicated. I have a tumor in the very center of my brain, in my pineal gland. The surgery to remove it is one the most difficult brain surgeries and there are only 3 surgeons in the U.S. that can remove them without causing a lot of brain damage. I live in Iowa and traveled to Houston, Texas yesterday to meet with the head of neurosurgery at Herman Memorial Hospital. He said he will do the surgery if I get off of all of my medication. He would like to do the surgery in 6 to 8 weeks....

In 2001, I began having problems with vertigo and anxiety. I saw my gp and he prescribed lexapro. I was a freshman in college and over the first year of college, I got very depressed. I ended up with an incorrect diagnosis of bipolar disorder type 2, on lithium and in the hospital. Over the next 3 years, I was on many different medications trying to cope with depression. I still had strange issues, vertigo, poor balance, brain fog and fatigue. They were usually attributed as a side effect of one of the meds in my cocktail. I began having severe headaches 5 years ago. Doctors started adding muscle relaxers and opioid pain medications. In an MRI 2 years ago, the tumor was found. 

Pineal gland tumors are usually benign and most surgeons have not operated on them. Medication is prescribed to manage pain and other symptoms. So, after all of this, I really want it out of my head.

After being on anti-depressants and being told I need them for so long, I am really scared to get off of them. Really, really scared. I still have serious problems with depression, but my surgeon thinks a lot of them will be alleviated by surgery. I currently take: klonopin, clonidine, effexor, citalopram, nortriptiline and tinzanidine. He wants me off of all of them. I have been tapering off of klonopin for 2 months, my psychiatrist prescribed the clonidine to help. I appreciate any advice. I will be seeing my psychiatrist as soon as I can to talk to her about tapering off quickly.

Thank you for reading,

Horus

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  • Moderator Emeritus

Welcome Horus,

Thank you for joining and sharing your story. I'm sorry to hear about your tumor, but its good you have found a surgeon who is able to operate.

 

I'm not sure what to suggest as far as tapering off your medication because we usually recommend tapers which last much longer than 6 - 8 weeks, and only one drug at a time.  We suggest reducing by no more than 10% of the current dose every 4 weeks, this reduces the risk of withdrawal symptoms arising. Please read through this which will explain why:

  

Why taper by 10% of my dosage?

 

You are in a difficult situation, you want/need surgery, but by coming off your medications fast you will be risking withdrawal symptoms. If you combine that with post-surgery recovery, I'm thinking you could be in for a difficult time. Is there a possibility of postponing the surgery to allow more time for safe tapering? How urgent is it that you get the tumor removed?

 

Does your surgeon think your original depression was caused by the tumor?

 

It would be great if you would put your drug and withdrawal history in your signature. Doing this helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

 

You will find a lot of friendly support here, others may have some suggestions.

 

Petunia.

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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Hi Horus,

 

Sorry to hear about the tumor, but I am glad that you found a doctor that will help you and remove it. 

 

Most probably others members of the forum will welcome you and give you some advices. But we are not doctors, and your on the best hands in the country as per you mentioned. Then they should know what to tell you, and what is best for you. Trust your doctors. 

 

If I am in your situation, I will make an appointment with the psychiatric and tell him/her that you have to be out meds for the surgical   procedure in  6-8 weeks, and see what she/he says. Maybe it is possible for you to stop the medications on that time frame.

 

Wish you the best and a full recovery. 

Zyprexa 15 mg  for 5 months  in 2010. I quit cold turkey /Zyprexa 5 mg from sept 2011 to sept 2012. I quit cold turkey

Lamictal and Geodon for around 6 months (from around sept 2012 to feb 2013)

Trazodone/ Klonopin 0.5 mg / 1 mg /Quetiapine  and gabapentin 600 mg/ Risperidone and gabapentin 600 mg

Gabapentin 1200 mg  around feb 2014 to  june 2014/ Gabapentin 900 mg july 2014 to December 2014

Invega 6 mg dec 2014 (for 8 days) / Gabapentin 600 mg

Invega 6 mg April 2015 / Gabapentin 900 mg

Invega 3 mg May 2015 / Gabapentin 600 mg

Since May 25th Gabapentin 600 mg

July 24 Gabapentin 400 mg August 18 Gabapentin 300 mg

Currently taking Invega 6 mg and Venlafaxine 150 mg. 2018

2019. I took invega 3 mg for two months. I stop taking medication two days ago (11/13) I am doing ok.

In three words I can sum up everything I’ve learned about life: It goes on.

 
 
 
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  • Moderator Emeritus

Hi Horus , welcome to the site. I'm sorry to read about your situation.

 

" I currently take: klonopin, clonidine, effexor, citalopram, nortriptiline and tinzanidine. He wants me off of all of them. I have been tapering off of klonopin for 2 months, my psychiatrist prescribed the clonidine to help."

 

Were you getting symptoms when you started tapering Klonipin? Did the clonidine help with that?

 

My concern is that your surgeon is not aware of how protracted withdrawal from antidepressants works.

By tapering off all or any of your meds too quickly , you may be setting yourself up for many many months of withdrawal. After 15 years , your brain has become very used to them.

Sure , your depression may be resolved by the surgery , but you'll have a way bigger problem on your hands.

 

Many people have had surgical procedures whilst on antidepressants and other meds. and it's been fine.

 

bw , Fresh

 

.

1987-1997 pertofran , prothiaden , Prozac 1997-2002 Zoloft 2002-2004 effexor 2004-2010 Lexapro 40mg

2010-2012Cymbalta 120mg

Sept. 2012 -decreased 90mg in 6months. Care taken over by Dr Lucire in March 2013 , decreased last 30mg at 2mg per week over 3 months. July 21 , 2013- last dose of Cymbalta

Protracted withdrawal syndrome kicked in badly Jan.2014 Unrelenting akathisia until May 2014. Voluntary hosp. admission. Cocktail of Seroquel, Ativan and mirtazapine and I was well enough to go home after 14 days. Stopped all hosp. meds in next few months.

July 2014 felt v.depressed - couldn't stop crying. Started pristiq 50mg. Felt improvement within days and continued to improve, so stayed on 50mg for 8 months.

Began taper 28 Feb. 2015. Pristiq 50mg down to 45mg. Had one month of w/d symptoms. Started CES therapy in March. No w/d symptoms down to 30mg.

October 2015 , taking 25mg Pristiq. Capsules compounded with slow-release additive.

March 2016 , 21mg

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  • Moderator Emeritus

Hello Horus,

 

when I was reading what you posted the same thought crossed my mind as what Fresh wrote. We see a lot of people getting off one or two drugs quickly and ending up in a very bad state. Abruptly stopping is really cause for concern that the surgeon is probably unaware of. 

 

Would it be possible to talk to him along these lines? As Fresh said, people go through surgeries while on ADs...The most you can do is try to reduce them for as much as possible in 8 weeks. But if you develop withdrawal symptoms which is unfortunately very likely after 15 years on the drugsit will be very difficult to say the least.

 

Wishing you the best of luck and keep us posted.

 

Bubble

Current: Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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  • Moderator

Hi, Horus,

 

Welcome to SA.  Your situation is really pretty unique among people I've seen post here. 

 

I guess I would start with a question which is, how in the world did your doctors manage to put you on this cocktail:

 

I currently take: klonopin, clonidine, effexor, citalopram, nortriptiline and tinzanidine.

 

I mean on what planet is it acceptable to have you on an SSRI, an SNRI, a tricyclic and a benzo (not to mention an ADHD med and a muscle relaxant)?  Talk about being polydrugged.  That is absolutely criminal regardless of what you were feeling from the tumor or otherwise.  Getting off that mix of meds after that period of time will be an extended process to try to do it in a harm reduction manner.

 

The posts by Fresh and Bubble are spot on.  I'm not sure I understand why the doctor needs to have you off all meds to do the surgery.  One would think that this was a purely physical process that doesn't extend to the chemicals in the brain.  Here's one scenario of what could very easily happen:

 

You get off all the meds in 6 weeks which is essentially, after that long on them, like a cold turkey.  You have the surgery and after the surgery you have really bad withdrawal symptoms.  The doctors deny withdrawal symptoms exist and instead determine that your symptoms are the result of brain damage from the surgery and put you on a different cocktail for the foreseeable future.  Not to paint the worst picture but that, in my mind, is a distinct possibility.

 

If your doctor has a really valid reason that you need to be off the meds then it becomes a difficult issue and balancing act.  If not (and neurosurgeons are frequently known to be very "my way or the highway") then it would be far better for you to negotiate a longer term taper process.  It will largely depend on the relationship you have with the doctor.

 

Best of luck with this,

 

Andy

Sertraline 50mg and Clonazapam .375mg from 2000 -- symptoms of dizziness Spring 2012

increased to .5 Clonazapam and 100mg Sertraline -- no improvement

Benzo microtaper from November 2012 to November 2014 (followed benzo sites "taper benzo first")

Started Sertraline taper in December 2014 cut by 25mg to 75mg; 62.5mg 1/1/15 and 50mg on 2/1/15

Held at 50mg through April 5 to use liquid 
Reduced dosage in 10% or less drops from 50mg to 25mg -- at single tablet of 25mg on 10/5/15

Transitioned to all liquid for accuracy while tapering -- Horrible insomnia -- back to 25mg liquid and held until October 1, 2016

10/16 -- 11/18 tapered very slowly to 10.6mg.  No real improvement and never really stable so updosed to 12.5mg (1/2 a pill) for convenience and long hold.

After 8+ months of holding with no noticeable improvement decided to add .4ml of liquid Prozac (about 1.5mg) to see if that improves the situation

Supplements, Magnesium, D3, Omega 3, curcumin, Valerian, 81mg Aspirin, L-Theanine, Vit. C,

 

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  • Administrator

Hello, Horus.

 

Yes, that is an excessive drug cocktail! It shows low competence. I gather your psychiatrist hasn't been much help with tapering either.

 

If I were you, I'd discuss the withdrawal problems with the surgeon. What would your recovery be like if you had never taken these drugs?

 

The surgeon may intend to put you on some other drugs after the surgery. If any are benzos, for example, it may not make sense to risk going off Klonopin as a benzo would be substituted after or during the surgery. At any rate, I would save the benzo for last and figure out what to do about the others. See Taking multiple psych drugs? Which drug to taper first?

 

How long have you been taking the clonidine? What has been your reaction to it?

 

This is very tricky. Some people can go off these drugs rather quickly, but others have terrible problems. And you have been on a lot of serotonin disruptors for a long time. Have you tried to reduce any of them before? What was your experience?

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

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