Evoldnahturt

[Evoldnahturt]

The relevant facts of my life:

 

- I've had trouble sleeping all of my life, I'm usually sleep deprived.

- I'm anxious off and on, usually on.  Often times the anxiety gets bad.  I've been like this for at least 15 years.  Probably, at least to some extent, most of my life

- I believe I may have been depressed most of my childhood.  It got bad in my late teens and has improved, but remained.

- My diet has been terrible all my life.  No fruits or veggies.  Just processed junk.

- I was put on Ritalin when I was a kid and took it for many years.  It caused me to develop ticks that have gotten better, but pop up sometimes, especially when I'm stressed.

- I became suicidal in my late teens and was put on a lot of different medications.  None of them worked and I didn't stay on them long.

- I took between 2.5mg to 5mg (because I was too lazy to cut the pill in half at times) of Zyprexa for about 14 years starting when I was around 19.

- I took Prozac for many years starting at around age 19 and quit CT with no problems several years ago.

- I used alcohol off and on over the years.  I quit for a long while before it quit getting me high.  I noticed that it started working again after I quit Prozac.  I started drinking again heavily for a few months, and then once or twice a week off and on after that.

- On rare occasion I would pick up a small batch of pain pills.  I usually used 5mg-10mg of Hydrocodone, but a couple of times I went overboard.

- I used other miscellaneous pills on rare occasion in my late teens.

- I smoked marijuana daily for many years and slowed down to a few times a month over the past few years, near the end it was usually just when I was out in nature.  I recently quit smoking completely.  I don't believe it was causing problems, but I've decided it's not worth the risk.

- I was bulimic for over a decade and quit over a year ago.

 

Summary of my withdrawal:

 

1.25mg weighs 47.5mgpw (mgpw = milligrams pill weight) when weighed on a scale (I use a GEMINI-20).  I dropped to 47.5mgpw (1.25mg, quarter of a pill) for somewhere between a few months up to a year.  I started quickly tapering sometime around or soon after September 2015.  At first I was able to cut my dosage quickly, but things got rough at times and I ending up having to jump back up almost to where I was before I started reducing my dosage.  I kept lowering my dosage, often getting to zero, and then raising it again when things got too difficult.  I did this for about five months.  My first symptoms were pressure in my head, a loss of feeling throughout my body, and fear.  

 

Sometimes, I believe, the fear was caused by the other side-effects.  However, sometimes I experienced the sensation of fear out of nowhere without being afraid of anything.  I usually would then become afraid of the sensation of fear getting worse.  In retrospect, I believe these and other effects were triggered or worsened by my taking (at different times) Xanax, Omeprazol, Hydrocodone, and alcohol during Zyprexa withdrawal.  It quickly became clear that alcohol was causing me to become fearful, because the effect was immediate.  I haven't used alcohol directly since near the beginning of this process.  I did, however, use it in the form of Zzzquill, which caused hypnic jerks with the sensation of fear while drifting off to sleep all night.

 

 I ended up realizing that Xanax was also causing problem, after using it throughout most of my withdrawal.  I later tested using Hydrocodone to see if I could at least handle pain meds.  It caused me to feel the sensation of fear while falling asleep that night.  Things got really difficult the days leading up to 2-14-16.  One of my step-brothers drove me to my mother's where I stayed for a week and a half.  I ended up increasing my dose to 142mgpw (3.75mg, 3/4 of a pill).  

 

While I was at my mom's, I saw her doctor to get some lab-work done as well as a neurologist.  The neurologist did an MRI scan of my brain.  A benign lesion was found, but nothing else.  The lab-work all looked fine except for the fact that my good cholesterol was low.  My mother has been very supportive, but my family has had a hard time believing that these issues were caused by the medication, which baffles me, but I'm very grateful that they're supportive.  I've been surprised by how unsupportive many families can be.

 

 I have reduced my dosage by 10% a month (calculated from the previous month's dosage) since then.  I held for two months initially.  My symptoms quickly got better at first and have slowly continued to improve.  I can't tell if they're still improving or not.  I'm holding at my current dosage for at least another month next month, probably longer.  I was initially eager to get my dosage down, I now realize that I should probably slow down to be safe.

 

 I'm currently at 104mgpw.  I've decided to avoid all other medications for as long as possible.  I'm not sure what I'm going to do if something happens where I need medication.  I'm also not sure how long I want this taper to last.  Stories like Mapleleafgirl's (4 year taper, got very sick 20 months after the taper) make me want to take longer than my body tells me to, like six or eight years.  I'm very grateful that I'm doing as well as I am and that reinstating Zyprexa has made things much better, but I got past my breaking point in just a few months with much less severe issues than what many of you are dealing with.

 

 I don't understand how you can take it.  I have a stronger will to live after going through this, but not strong enough to suffer like that for years.  I would have to kill myself and I can't stand the thought of doing that to my mom while she's still alive.  The stories on here, what's happened to me, and the fact that I'm still not fully healed after four months of taking a larger dose really scares me.  I'm a lot better and what's persisted is manageable, but I figured I would have healed by now.  I promise that however this turns out, I'll provide you guys with updates over the years.

 

Symptoms I've experienced:

 

- Pressure in head

- Burning sensation throughout my body, especially in my thighs and legs

- Arm, leg, upper body, finger, or hand jolts (especially when falling asleep) (Hypnic jerk?), I've had this, to some extent, for many years, but it got worse during withdrawal

- Tingling, numbness

- Pins and needles (especially when falling asleep)

- Knots and frequent noise in stomach

- Extreme difficulty swallowing food (briefly before I increased to 142mgpw)

- Irregular heart beats

- A very hard heart pump that makes me tense up (not as frequent now)

- Ringing in an ear (not very often these days)

- Pressure in an ear

- Tachycardia, especially when getting sleepy, falling asleep, and twice while asleep (woke me up)

- Blurred vision when waking up as well as dizziness (this persisted throughout the process of weaning off of Zyprexa, it stopped when I increased to 142.5mgpw (3.75mg))

- Burred vision and dizziness outside of waking up in the morning, this wasn't very frequent

- Muscles twitching, like after a workout, but more frequent

- Akathisia

- Insomnia, I've always been an insomniac, but it got much worse in the beginning and then got back to normal early-in

- My mind has been slipping.  I'll say things that don't make sense.  I'll say I'm hot when I'm cold.  I take a long time to come up with a response.  This has been the case for years

- Other things that I couldn't describe.  I've found that if I can't describe something, I forget about what it was like eventually.

Edited July 4, 2016 by scallywag
Added line breaks

[mammaP]

Hi Evoldnahturt,  welcome to SA, first, I have edited your post slightly just to make some line breaks so it is easier to read. Thank you for your detailed explanation of your taper and for filling out your signature. You have probably already seen our topic for tapering zyprexa but in case you haven't, here is the link. It is possible to make a liquid from tablets which makes it much easier to measure the small doses. 

 

http://survivingantidepressants.org/index.php?/topic/3743-tips-for-tapering-off-zyprexa-olanzapine/

 

You have had so many drug changes that it could take a while longer to stabilise and you have done exactly the right thing holding your dose.

 It is good that you have been improving but sounds like your nervous system is still a bit unstable so holding a while before another cut is a good idea. 

Don't worry about what might happen in the future, all we can do is our best NOW, and you are doing great.  You will get better, but it will take time. You can't compare yourself with others, there are different things going on for all of us, our bodies all react differently and heal at different rates. The drugs are different too with different cocktails and side effects. Mapleleafgirl did her very best tapering Paxil and very sadly had withdrawal after 20 months off but that is a notoriously nasty drug and one of the worst we have to deal with.  

 

Many people here have some success with fish oil and magnesium,  which can relieve lots of symptoms of both side effects and withdrawal. 

 

http://survivingantidepressants.org/index.php?/topic/36-omega-3-fatty-acids-fish-oil/

 

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

[Evoldnahturt]

Thanks for the info!

 

 

It is possible to make a liquid from tablets which makes it much easier to measure the small doses.

 

I thought about that, but I was afraid it might not be as repeatable as weighing on a scale.  I'm not sure what I'm going to do when it gets down to a tiny amount that can't be weighed with my scale, though.  I take fish oil every night with Zyprexa.  I sometimes use magnesium.  I've tried Natural Vitality Natural Calm, which didn't work at first, worked for a couple of days when I tried it later, and then quit working again.  I also tried the Dr. Teals epsom salt bath, which had a calming effect, but it seemed like it might have made the myclonus worse, which spooked me and I haven't tried it again since.  Also, if tapering for four years is safer than tapers a few months.  Wouldn't tapering for six or eight years be even safer?  I'm afraid of moving too quickly for my body and not being able to reinstate after I get to zero.

[herewego]

I too am really nervous about having long term withdrawal after jumping off. Perhaps doing 5% drops every 6-8 weeks, and when you get down to the final two cuts hold there for a year each in case there is any cumulative W/D that hasn't caught up with you yet. That way your body is all caught up with W/D when you jump off - a theory anyways. The last two cuts (at least with how low I am planning to go) would be so small the negative side effects would be greatly reduced if almost nothing.

[Evoldnahturt]

I suspect things got as rough as they did because not only did I drop doses way too quickly, I added other drugs as well.  My most troublesome symptom, the skin and muscle burning, was likely caused by Xanax and possibly hydrocodone as well.  Skin burning is a common side effect when withdrawing from benzos.  I suspect you'll be fine.  You've figured out how to handle this early enough to keep your nervous system from destabilizing, which should reduce your chances of becoming symptomatic during a proper taper.

[Chicago77]

I get the skin burning sensation too. It comes and goes, but when I have it, it's all over my body. It feels like I'm sun burned all over my body. It sucks. I've found that a cold bath and ice packs help. I was on Lexapro for 15 years and I've heard that it's a common side effect from Lexapro. 

[Evoldnahturt]

I've been feeling a lot better since I started an elimination diet on 8-29-16.  By day two on the diet I was feeling much better.  I only feel crappy again whenever I over-exercise or test a food that I end up discovering that I'm sensitive to.  The burning is still there most of the time, but it's very mild and doesn't bother me much anymore.

[scallywag]

Good news, E.  Do you think this is something you'll continue throughout w/d and beyond?

[Evoldnahturt]

I'll keep periodically test foods that I reacted to to see if I'm still sensitive to them.  As long as I keep failing tests for a particular food, I'll stay away from it.  Regardless, I'm going to try to eat healthier, in general, to help my body repair itself.

[Evoldnahturt]

I keep feeling better over time.  My symptoms haven't been bad since I started the elimination diet.  I cheat sometimes, but not nearly as often as I did before I realized the importance of staying away from bad foods.  I also don't seem to be as sensitive to foods anymore.  The progress has been slow enough for me to keep asking myself if I'm still healing, but throughout this process, whenever I look back a month or two or three, I can almost always say that I'm doing noticeably (or a lot) better than I was then.  This progress is being made in spite of the fact that I've been tapering.  What seems to have helped more than anything is staying away from other medications, recreational drugs, alcohol, and caffeine.  Eating healthy has also played a significant role.  To a lesser extent, drinking lots of water, getting plenty of sleep, not exercising too much, and reducing emotional stress all have made a noticeable difference.  Exercising a moderate amount seems to really help with the anxiety, specifically.  I worry a lot about my overall health these days.  I was extremely worried when I got sick and I'm starting to suspect that the worrying won't completely go away for a while at least.  The worry doesn't make me very anxious, but it does make me depressed.  My thoughts keep focusing on how short life is and how painful the dying process is for a lot of people.  My uncle obsessed like this after he got sick for a brief period in his thirties.  It ruined his life.  I really hope these thoughts go away someday.

[Altostrata]

Hello, Evoldnahturt, how are you doing?

[Evoldnahturt]

Much better these days.  The symptoms that have remained vary between just enough to ruin a day to barely noticeable.  Bad reactions to chemicals are usually no worse than a gentle warning now.  The condition doesn't interfere with my happiness much these days.

[Altostrata]

Good to hear, Evol.

 

What has been your tapering method?

[Evoldnahturt]

I've been meaning to document that.  I have most of the information together, but I need to spend more time working on making the information understandable to as many people as possible.  I'll finish with that when I get some free time and will post it.

[Altostrata]

Thanks, it will be a valuable addition to our tips for tapering Zyprexa.

 

If you would, please phrase your comments on the methods we have proposed a bit more constructively.

 

Where are you in your Zyprexa taper? How has it been going?

[Evoldnahturt]

I'm scheduled to have surgery tomorrow to reattach a tendon in my thumb.  The doctor is okay with just using propofol and lidocaine, but I just realized that propofol lowers your blood pressure.  Whenever I stand up, sometimes I'll start to black out.  When this happens, I'll bend over and the blacking out stops because it raises my blood pressure back up (I think).  The last time I didn't bend over, I fully blacked out for a few seconds and my symptoms ramped up for a few days after that.  I'm concerned that propofol could do this to me for a much longer period of time and could do more damage.  Do any of you have a better understanding of this and what the risk of this happening might be?  I'm told the quickest way to manage the blood pressure under propofol is to use drugs like epinephrine.  Adding more saline also works, but can take minutes to raise your blood pressure.  I'm fairly certain lidocaine won't cause me any issues because I had him inject me with it today to see what would happen.  I didn't have a bad reaction.

[Evoldnahturt]

I'm having a bad reaction to the lidocaine.  When I start to fall asleep, my heart races and keeps me awake.  I don't think I'll be able to go under for the surgery in 6 hours.  I think it will just cause my heart to race.  I don't know what to do, I don't want to live with a disabled thumb.  If I don't repair it soon, the tendon will receed into my wrist

[Evoldnahturt]

I don't want to risk undoing all the progress I've made.  I don't want to live with mallet thumb.  There's no good solution.  I feel terrible and I'm terrified of the fact that surgery will make it much worse.  He was supposed to inject me with only 0.1cc and then 1cc.  Maybe the second injection was 5cc, which is what he wants to use for surgery.  If it wasn't, I'm really screwed.  I think I'm screwed anyway.  I don't know what to do.  I have no idea.  I have no time to research this.  I'm going to regret whatever decision I make. 

[Evoldnahturt]

They already think I'm insane.  They've been so patient with me.  They're not going to be willing to reschedule to let this bad reaction pass.  I know many of you are suffering so much more than this and it's an insult for me to b**** about it as much as i am.  I'm just so tired of feeling like I'm constantly falling apart.  I'm not nearly as strong as any of you.  I can't handle a fraction of what you live with.  I can't stand to see myself continue to atrophy even in the relatively benign ways that I have been.  It's killing me.  It makes me feel like I'm a step away from death.  That feeling gets stronger with every blow. 

[Songbird]

I merged your propofol topic into your intro topic here, and also merged your tendon surgery topic into the "surgery and anaesthesia" topic.

 

I hope you're recovering well from the surgery.

[Evoldnahturt]

I just moved to Colorado and will need to see a doctor up here to keep getting my prescription.  Do any of you have any pointers on what to say/not say to the doctor?  Should I just tell them that I feel great and just want to keep taking my medication and not mention the taper?  Will my previous doctor likely share any information with them?  One thing I'm concerned about with talking to one of these people is the risk of getting locked up and force fed medication for saying the wrong thing or coming across the wrong way.  Is that almost a non-existent threat these days?

[ChessieCat]

I suggest writing down what you plan to say and rehearsing it.  You need to stay calm, talk in a gentle way but be assertive and remember that you are the customer.  And don't sound like you know about tapering and withdrawal.

 

You could always ask them "if I ever wanted to reduce or get off my drug in the future what would be the best way to do it".  That would allow you to find out whether they know anything about withdrawal.  If they ask why, just say that you had read somewhere about people having bad experiences if they stopped their drug too quickly and I don't want that to happen to me if I decide to reduce my drug.

 

If they make a suggestion about a different drug or dose, just say that you would like to think about it first before making a decision.

 

If you want to you can pretend that you are doing okay on the current drug/dose you want prescribed or you can say that you would like to try to reduce the amount of drug you are taking.  You don't have to tell them that you are planning to get off completely.

 

These topics provide some ideas. 

 

How do you talk to a doctor about tapering and withdrawal?

What should I expect from my doctor about withdrawal symptoms?

 

32 minutes ago, Evoldnahturt said:

Will my previous doctor likely share any information with them?

 

I don't know whether the USA has online medical records like Australia does.

[Altostrata]

Evold, how are you doing now?

 

1 hour ago, Evoldnahturt said:

These days I just do 50% drops and hold for three months, which makes tapering easier.  This gives me a rate of about 20% per month instead of the recommended 10%.  I decided to try this faster rate because I'm doing a lot better now and figured I could go back to 10% if my body started complaining about it.  So far so good, but I'm not courageous enough to try to speed it up beyond that.  By the way, I've looked and am no longer able to find the yellow scoops.  I hope you figure out an approach that works for you.  Godspeed.

 

How much olanzapine are you taking? Any withdrawal symptoms?

[Carmie]

Hi Evoldnahurt, 

 

I’m wondering how you’re going too. How did you go at the doctors?💚

[Evoldnahturt]

On 2/18/2019 at 12:34 PM, Altostrata said:

Evold, how are you doing now?

 

 

How much olanzapine are you taking? Any withdrawal symptoms?

 

I'm down to 0.05mg.  I expect to jump to zero sometime in 2021 or 2022 if my body doesn't ask me to slow down.  Very few symptoms.  I can usually feel the burning and sometimes stinging in my muscles and skin, but it's very mild and doesn't affect me.  It's just technically there.  It can get a little worse when I'm stressed, but it doesn't increase much.  I developed a pathological fear of being poisoned during withdrawal, which has stuck around, but I think it's improving slowly and isn't more than a mild, occasional nuisance.  Overall, I'm doing better than I was before all this started because of all the lifestyle changes it forced me to make.  I'm extremely grateful that my case has been as mild as it is.  I recovered so quickly compared to many people here.

 

11 hours ago, Carmie said:

Hi Evoldnahurt, 

 

I’m wondering how you’re going too. How did you go at the doctors?💚

 

I haven't seen one yet.  I have two more refills, which may last me the rest of the year.  I'll have to see a doctor eventually, but I may put it off a bit.  I'm a little apprehensive about it.

[Altostrata]

Good to hear, Evold.