Hi everyone, I am Horus

[Horus]

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

[Petunia]

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.

[alldaisy]

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. 

[Fresh]

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

 

.

[bubble]

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

[apace41]

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

[Altostrata]

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?