☼ SorrowExpert -- thought I was damaged for life, but I'm not.

[Meimeiquest]

SE, I think your time would be better served by writing out for SA a thorough history with tapering schedule than looking up catastrophic information. You are right that something is amiss, but no one can really help you with the elusive.bits of info you provide. Would you like in or out? I hope in .

[SorrowExpert]

SE, I think your time would be better served by writing out for SA a thorough history with tapering schedule than looking up catastrophic information. You are right that something is amiss, but no one can really help you with the elusive.bits of info you provide. Would you like in or out? I hope in .

 

I know.  I'll try to do it, I'm just so anxious now that it's hard to function.  I know I got worse after the last restart when I was hospitalized and didn't really recover.  If I'm stuck in the state that I'm in now after updosing again forever...

[Meimeiquest]

Been there, done that, anxiety-wise. In your history, too, tell us more about your family. Do I remember right that your mom has schizophrenia, starting when? Any crumbs will be good for you to get out, and you never know what will come of it. A few months ago, in writing how awful I felt, I mentioned indirectly changing my BP dose, and someone caught on that that change was the problem, and they were right.

[SorrowExpert]

Been there, done that, anxiety-wise. In your history, too, tell us more about your family. Do I remember right that your mom has schizophrenia, starting when? Any crumbs will be good for you to get out, and you never know what will come of it. A few months ago, in writing how awful I felt, I mentioned indirectly changing my BP dose, and someone caught on that that change was the problem, and they were right.

 

She had psychotic depression.  She went inpatient and had ECT and is doing better now...but is on meds....

 

I'm just falling apart.  I can't deal with the anxiety and derealization and insomnia and pain in my head anymore.   It's just going on and on and I'm not stabilizing....if there were any medication that I could take at this point to improve things I'd do it.   I don't think I can hold out in this pain much longer.  Can't even take a shower.

 

I'm afraid if I'm hospitalized I'll die, but how long can I keep going waiting to improve?

[Meimeiquest]

The reason I asked is that I think there may be.some help for those of us with psych-laden family histories in new research into methylation pathways. Although that is unlikely to help you sleep tonight . And remember, if you want to go into the hospital, you certainly are welcome to do that.

 

How much Zyprexa did you take last night? How long on that dose? What supplements? What other meds?

[mammaP]

Hi SE, you are very scared and anxious, but you will not die from withdrawal.

Some people get very very sick and I'm sure some have died from the likes of heroin and other hard drugs

when going cold turkey. You are not  stopping those drugs cold turkey. The person who wrote that is one

person who believes they are permanently damaged. Where did they get their info from? The brain stem dies? 

Please take care with your research, you can find someone who had permanent brain damage from stopping

sugar if you look hard enough. I'm not belittling your fears, I know they are very real and that you are suffering

badly but it will pass. 

 

I once went to the doctor to ask him to admit me to hospital, I just couldn't cope any more and desperately needed

sleep. Thankfully when I was sat in front of him I couldn't do it, couldn't face going to that hospital and being pumped

full of more drugs that might numb the pain for a short while but then make me very sick just like the others., and

then have to get off those too. Try to take each day as it comes and just get through it, the clock keeps ticking and 

you are healing with every tick, even though it doesn't feel like it.  I really hope you get some sleep soon, everything

seems much better after some good sleep. 

[bubble]

SE, I think your time would be better served by writing out for SA a thorough history with tapering schedule than looking up catastrophic information. You are right that something is amiss, but no one can really help you with the elusive.bits of info you provide. Would you like in or out? I hope in .

 

this is the message all of us are trying to convey to you. It is like you are testing our endurance and waiting on us to proclaim you gamaged and doomed forever  

 

We all know how awful it is to be anxious. Feeling like you will die is a part of it but it is just a feeling. As horrible as our conditions are, we don't die from them.

 

Try to write down your tapering history, as little as you can. It might help you to put things into perspective and we might be able to help you more.

[cymbaltawithdrawal5600]

Hi SE,

 

Bubble and Meimei are right, we are all trying to help you. You have to remember that anyone can write anything they want on the internet and if you search for doomsday stuff you will surely find it. Better to distract yourself with calming images or music than looking for stuff that will just make you feel more anxious. You can do it!

[SorrowExpert]

Hi SE, you are very scared and anxious, but you will not die from withdrawal.

Some people get very very sick and I'm sure some have died from the likes of heroin and other hard drugs

when going cold turkey. You are not  stopping those drugs cold turkey. The person who wrote that is one

person who believes they are permanently damaged. Where did they get their info from? The brain stem dies? 

Please take care with your research, you can find someone who had permanent brain damage from stopping

sugar if you look hard enough. I'm not belittling your fears, I know they are very real and that you are suffering

badly but it will pass. 

 

I once went to the doctor to ask him to admit me to hospital, I just couldn't cope any more and desperately needed

sleep. Thankfully when I was sat in front of him I couldn't do it, couldn't face going to that hospital and being pumped

full of more drugs that might numb the pain for a short while but then make me very sick just like the others., and

then have to get off those too. Try to take each day as it comes and just get through it, the clock keeps ticking and 

you are healing with every tick, even though it doesn't feel like it.  I really hope you get some sleep soon, everything

seems much better after some good sleep. 

 

Thank you for your wishes.  I really wish I could believe I was healing, but I just keep feeling like I'm more damaged.  Yes, I'm just trying to get through each day for now - I have such severe anxiety and derealization at the moment that I don't think I'd survive being hospitalized anyway.  Catatonia in the ICU would be my fate.

[Meimeiquest]

I thought surely you had disappeared for the hospital. Congratulations on another day down!

[SorrowExpert]

I will try to write out a thorough history tomorrow.

[SorrowExpert]

I thought surely you had disappeared for the hospital. Congratulations on another day down!

 

I think about having the kind of symptoms I'm having now in an unfamiliar environment, and I just don't think I'd survive it.  It's a horrible feeling to think that in a crisis that hospital care might kill you.  My parents and I have been hoping to find someone who can prescribe medications and who may be knowledgeable about these kind of problems that can visit me in the home, but so far no such luck.  If I could just stabilize better, I might be able to get out to see someone.

[bubble]

I will try to write out a thorough history tomorrow.

 

I really feel happy for your very positive news: getting through the days one by one, trying to find a professional who could visit you at home (did you read here how most health care professionals don't understand psycotropic meds at all?) , trying to write the hostory...

 

I'm too much of a perfectionist at times so when I feel compelled to be thorough, I never get down to doing things at all. So I understand how hard this can be. What helps me is just doing something, not everything I want.

 

Also congratulations on the bravery amidst all that awful anxiety and derealisation.

[ndmaar]

SE, hi. Have been following your topic for some time.

Like you, I had a very bad experience with olanzapine, and I also know all too well how it is to feel like "on some nightmare drug trip that I cannot escape" and much more than that. Olanzapine definitely messes with GABA system. I damaged my GABA system by drinking large dose of alcohol once when I was on a typical antipsychotic, and then by experimenting with gabaergics phenibut and baclofen. But olanzapine was the worst, I developed severe OCD after CTing it. I think that your agoraphobia and my OCD have the same underlying mechanism, and I've seen few other people on this forum who have something similar after olanzapine withdrawal.

 

It may sound silly, but I've recently found out that eating sauerkraut is helping me with OCD and in overall. Not sure if it is due to production of B vitamins by bacteria or an indirect effect on inositol (*), but I feel a definite improvement 2 hours after eating it. Regular B vitamin pills (and even B12 shots, but I might give them another try) don't give me anxiety like for others in AD withdrawal, but instead intensify my OCD. I tried drinking kefir and other cultured milk products with bifidobacteria, but had a bad reaction (probably because of ethanol in them?). Pure inositol seemed to help with OCD at first, but decreased sleep and then turned out very badly. So I suggest you to try sauerkraut and other probiotics, and to research about inositol.

 

Thinking of you,

ndmaar

 

*Also, bifidobacteria contain phytase activity, enabling the dephosphorylation of phytic acid (myo-inositol hexaphosphate, IP6) and produce several myo-inositol phosphate intermediates, IP3, IP4, and IP5. IP6 has been shown to have antinutritional effects by limiting the dietary bioavailability of amino acids and minerals such as Ca2+, Z2+, and Fe2+ [calcium, zinc, and iron]. However, bifidobacteria reduce these effects by dephosphorylating IP6 into less phosphorylated products during food processing and gastrointestinal transit.

http://survivingantidepressants.org/index.php?/topic/5019-hypersensitive-to-b-vitamins-your-answer-may-be-a-probiotic/

[SorrowExpert]

Here is something I wrote near the end of 2011 as part of my history.

 

I have suffered from a variety of disabling neurological symptoms for going on six years, beginning in approximately February of 2006. Around that time I suffered from some type of flu-like illness, but of a much more severe type than anything I had experienced before. During the illness I began suffering from intense headaches/neurological pain, panic attacks, vertigo, muscle spasms and twitching, and derealization/depersonalization, all of which persisted to some degree after the febrile portion of the illness was gone. The chronic vertigo/dizziness was the most persistent and devastating symptom, and I lost my job because of it. No conclusive diagnosis or cause of the symptoms I suffered was ever found, and though I was treated for possible Lyme disease with antibiotics for some time it never really made a dramatic difference in my symptoms. I was also prescribed benzodiazepines and Lexapro, which didn't really help my symptoms much either, but did lead to my becoming physically dependent on the benzodiazepines.

 

I will now move the story forward to late 2007. After a terrible acute withdrawal episode from the benzodiazepine I was taking (running out of Ativan, no way to get prescription refilled) I decided that it would be best to attempt to withdraw completely from the medication. I switched over to Valium and tapered off the medication over a period of many months. At some point along the line I ended up on 200 mg Seroquel. It was difficult, but I managed to complete the benzo taper by the end of 2008. I also spent some time doing vestibular rehabilitation therapy, and the combination of the two actions did pay off – by early 2009 I was virtually free of vertigo, panic attacks, and derealization. It was the best I had felt in a long time. I wasn't 100%, yet, however, so the psychiatric nurse practitioner I was seeing at the time suggested I try a bit of a “non-addictive” antipsychotic called Zyprexa in lieu of the Seroquel. I started on 2.5 mg. This was a big mistake.

 

By mid 2009 I could feel things deteriorating again. My sleep worsened, and I found it more and more difficult to maintain a “normal” sleep schedule. I found myself not able to fall asleep until later and later, until I wasn't falling asleep until 8 or 9 o clock in the morning, and was waking up at 5 in the evening. All my attempts to maintain a “normal” sleep schedule failed - my body was determined to only sleep during the day. I gained fifteeen pounds. I started getting painful cystic acne all over my forehead, back, and chest. I started feeling derealization again.

 

In late 2009 I decided to try to ditch the Zyprexa. I figured it was such a “small” dose I could just do it cold turkey – it certainly couldn't be worse than what I went through when I finally jumped off the benzos. Of course, I was terribly wrong. The first night off, I didn't sleep very much. The next day, the horrible pressure in my head started. By the end of the next day, I had a fever of 101, and my anxiety was through the roof. My muscles had started to stiffen up, and mucus was pouring out of my nose. I went back on the pill, and these symptoms quickly “resolved.”

 

To shorten the story somewhat, I failed two attempts at tapering the drug in the period from late 2009 to mid 2010. One of these attempts landed me in the hospital. Of course, they could do nothing for me. As a consequence of that attempt, I also now suffer from chronic agoraphobia and am more limited in the distance I can go from my home to seek help.

 

In December of 2010 I began my third taper attempt. It involves a milligram scale, a mortar and pestle, and carefully grinding the tablet into a fine powder which I then measure out. I've been aiming for a tapering rate of approximately 3-5% a month, and have in general met that goal. I am currently taking less than half a 2.5 mg pill, which is “uncharted territory” for me as I have never been on such a small dose since beginning the medication.

 

However, the taper has been extremely difficult. I chronically suffer from devastating neurological symptoms such as headaches, insomnia, the aforementioned agoraphobia, painful fasciculations and muscle spasms, and fatigue. I often get some kind of spasms in my legs and feet that causes the muscles to shake and twitch violently and uncontrollably, like some kind of dystonia. Electric shock sensations in my head and ears. I constantly feel like my nervous system is in “overdrive” and hyperactive, and “good” days are few and far between. I have severe derealization constantly. I am unable to work or go to school.

 

As bad as this sounds, sometimes things get much, much worse. On occasion I experience a kind of neurological pain that's so terrible I don't even know if there is a word to describe it. I haven't been able to find anything in any medical literature online that describes this particular symptom. It doesn't exactly feel like pain in the traditional sense of the word – it is like an unberable tearing, twisting sensation in the brain that is unrelenting and remorseless, like your mind is being torn apart from the inside out. “Akathisia” is the only word that comes anywhere near describing what the symptom feels like, but it doesn't exactly match. I don't have any urge to move my body. Just a terrible internal sensation. This sensation will go on, at varying levels of intensity, for day after day or a week until it finally dies down. If it didn't die down eventually, suicide would be the only option.

 

Over the past summer I had one of these “episodes” that was extremely persistent, and after a time I found myself experiencing the same kind of symptoms I experienced when I tried to cold turkey off benzodiazepines. I spent all of July and August in what for all intents and purposes felt like acute benzodiazepine withdrawal. But I haven't taken any benzos in over two years.

 

I have not been in contact with the nurse practitioner who prescribed the Zyprexa, since I was dropped as a patient after I developed agoraphobia. I have managed to see both a psychiatrist and a neurologist at some point in the past year, and have had bloodwork done. There were no problems except an elevated cholesterol level. The neurologist basically referred me to another neurologist at another major local hospital to have MRIs and CT scans done – because of the agoraphobia this has so far been impossible. Meetings with the psychiatrist were also not fruitful. He stated that anyone should be able to quit Zyprexa cold turkey if they want to with no problems, and that my symptoms were just due to an anxiety disorder. I asked how an anxiety disorder could cause shaking muscle spasms in my legs. Eventually he said “I don't know what your real problem is exactly, but I bet you're going to suffer for a really long time!” All other psychiatrists in my local area are either fully booked, or do not accept Medicare.

 

I have very little support from my family in this endeavor, and I have not had any friends or social life in many years. The only thing that keeps me going through every long night after night of intense suffering is the hope that if I can somehow complete the medication taper I will have a chance at recovery. I feel certain that the medications I have taken over the years have left me with some form of brain damage, and this taper is my final gamble in hopes of having better days in the distant future. Sometimes, though, like these past few days, lying in bed with nothing but the pain I feel I might try anything to make it stop. Something like Remeron or Trazodone, something with a similar receptor action profile as Zyprexa, that I might use to make things easier. Then taper off the secondary medication. But I'm terrified of just compounding the damage.

 

[SorrowExpert]

I see that it took me a year to taper down to 1 mg from 2.5, and I had terrible symptoms and failed.  The second time I went faster, because I had no choice as my family has been falling apart.  I've been sick for so many years, I'm so scared of dying now I can't sleep anymore.  I don't even know who I am anymore sometimes.

 

It seems my mom has been slipping into an agitated/psychotic depression again (it wasn't dementia as I thought originally).  She has been staying in bed all day and not taking care of herself.  If she is hospitalized again, I think I will go to the same hospital so we can be together, whatever the consequences may be.

 

I'll try to keep posting here if I can, whatever happens, I'll just try to get through each day for now.  I'm still trying to find the file with the exact tapering schedule I used the first time.   

[SorrowExpert]

I'm wondering if increasing the medication further at this point would make any improvement in my situation.  I'm not stabilizing and I'm afraid I'm not going to survive.

[Meimeiquest]

SE, This breaks my heart. It seems like your tapering problems might be secondary to this neurological situation. What would it take to get you able to see a neurologist and have an MRI? You have worked very hard from home, but your description doesn't even sound like a psych situation, except maybe trauma from the hospitalization. At least maybe work on fleshing out your written history some more, maybe how you were tested for Lyme Disease, what the hospitalization findings and outcomes were, etc. Your writings sound like you blame yourself for screwing up a taper, but, at least to me, it doesn't sound like that.

 

When you talk about fear of death, exactly what do you mean? I am sorry your mom is struggling so.

[lexicon]

I am so very sorry that you are suffering so .. I will hold you in my prayers, asking for wellness and healing.

 

There is a wonderful, compassionate doctor in Boston, who understands these drugs, and the distraction they can cause.

 

He works at Mass General, and his name is Dr. Maurizio Fava .. I feel certain he will listen to your story.

It will be worth seen him, for his opinion ..

 

Thinking of you, and wishing you blessings ..

 

Love, Lexi

[bubble]

Thank you so much for sharing your very painful history with us!

 

Now we indeed understand your situation and feelings a lot better. I feel so much for you and your pain.

 

After I read that bit of your history, I had the same thoughts as Meimei: in your case this awful, undaignosed organic condition seems to be the primary factor and psychic meds came only later and their role might be very secondary....

 

I totally agree with Meimei that you might benefit from the medical tests to get to the root of your organic condition. I don't think they would necessarily mess up with your psych meds and believe you can refuse that kind of treatment. On the other hand, there is a greta possibility that they will be able to treat it.

 

In any case, we are here for you to support you.

 

Big hug,

bubble

[SorrowExpert]

Thank you so much for sharing your very painful history with us!

 

Now we indeed understand your situation and feelings a lot better. I feel so much for you and your pain.

 

After I read that bit of your history, I had the same thoughts as Meimei: in your case this awful, undaignosed organic condition seems to be the primary factor and psychic meds came only later and their role might be very secondary....

 

I totally agree with Meimei that you might benefit from the medical tests to get to the root of your organic condition. I don't think they would necessarily mess up with your psych meds and believe you can refuse that kind of treatment. On the other hand, there is a greta possibility that they will be able to treat it.

 

In any case, we are here for you to support you.

 

Big hug,

bubble

 

When I was in the hospital last year, they did an MRI and an EEG.  Both came back fine...I think now this is just drug damage.  If I go to the hospital in my current state, I don't think I'll make it out again.   They'll give me benzos, and I can't even take a single dose of a benzo now without having a massive rebound effect and feeling like I'm going to have a seizure.

 

I think Zyprexa has pooped out on me and now I'm in tolerance withdrawal, just like a benzo.  This is why I fear death...my nervous system will just become more hyper-excitable until it's completely unstable.

[Meimeiquest]

Well, that's a blessing (clear MRI) what kind of Lyme testing did you have? What did it show? Have you tried any supplements or dietary interventions?

[SorrowExpert]

Well, that's a blessing (clear MRI) what kind of Lyme testing did you have? What did it show? Have you tried any supplements or dietary interventions?

 

It's not a blessing.  I'd give anything to have this be a physical problem with my brain.  But I think the problem is that Zyprexa is acting like a benzo and has hit tolerance as I mentioned above.  There's no simple answer to that.  I seem to be getting interdose withdrawal from Zyprexa lately, though I never did before.  That must mean it's acting like a benzo?

 

What I wish I could try is to get on a different anti-psychotic one that would allow me to sleep, so I could cross-taper maybe.

 

I'll try to see if I can find my Lyme test results.

 

I think maybe there was an interaction between my original illness, somehow, and the psych drugs I was given.  The original illness, infection, whatever, affected my brain but is long gone...but the psych drugs prevented my brain from properly healing from the illness and left it in a permanent deranged state.

 

Just being in pain and anxiety all the time sucks.  It's very hard and I feel myself getting weaker.  I appreciate the support of everyone here, and I'll keep hoping for some kind of positive outcome.

[Meimeiquest]

Just keep writing anything you can think of. I am off to the pdoc this afternoon, but I know others are reading and caring.

[SorrowExpert]

I'm not sure what to do at this point.  I can't cut back on the medication, because I have to be stronger to deal with the insomnia.  But the medication is keeping me sick.   I just feel completely trapped.  There's got to be some solution to make life livable.

[bubble]

We will continue thinking of what could help...

 

I will check what tips they give here on tapering of Zyprexa... All I know that it is a really nasty drug. But a lot of us have been on nasty things for over 10 years and even 20. I so like it when you say there must be some solution to make life more livable. Sure there is...

 

Will keep looking for a way.

[SorrowExpert]

One of the worst symptoms is derealization.   I've suffered from severe derealization for years, and is the cause of the agoraphobia; it has been so bad lately that I can barely stand it.

[Meimeiquest]

How was your health before the flu-like illness? Anything a bit odd, any meds? Did any of your symptoms start before then? Am I reading this right that you have never been stable/well since the flu-like illness? I am asking because some people who have had extreme reactions to taking or stopping psych meds have some slight mutations that cause this to happen. I can't capture a web page well with my iPad, but you can see some info if you google MTHFR and COMT (and together), there's an article by a dr. in Philly that explains a lot, and one by a dr. In KY that is simpler.

 

Regarding insomnia, do you take magnesium? I believe magnesium glycinate is the most absorbable. Epsom salts baths do not work for me regularly, but they are fabulous irregularly. 4 cups Epsom salts, 1 cup baking soda, essential oil if you have it. Soak at least 20 min. It draws out toxins and provides magnesium.

 

Hopefully others will chime in, but I think slowly, in tiny increments, raising the Zyprexa has a higher likelihood of helping than hurting, but definitely don't go up and up if it feels worse. If you were working with a doctor, micro dosing Lamictal might help.

 

Crista has written on this forun about Lyme.

[Petunia]

Hopefully others will chime in, but I think slowly, in tiny increments, raising the Zyprexa has a higher likelihood of helping than hurting, but definitely don't go up and up if it feels worse.

 

Trying to chime in, but I'm not sure I have anything helpful to add.  Once again I read back through your thread SE.  Its obvious you are suffering greatly and should never have been put on Zyprexa in the first place.  I think you have been having a bad reaction to it, but now are also getting withdrawal effects along with rebound interdose symptoms from irregular use of other medications.  Its all become very complicated.

 

I managed to take a walk today, I don't know if that counts? I never really get any "windows" of the type people describe, except for maybe a brief period in the fall.  I was under the impression that people only got "windows" when they were completely off medication for some time

 

But then on the other hand, you do have brief periods of improvement.  You left the house and went for a walk less than a week ago.  Your agoraphobia is not constant.  I'm wondering if there is a pattern.  You have written that its connected to derealization.  I completely understand that because I'm sure most of my agoraphobia is connected with this symptom.

 

For me, all of my symptoms are worse during the morning and most of the day, but they decrease sometime mid to late afternoon usually.  If I go out when the derealization is particularly bad, then it seems to re-traumatize me.  So I've been making an effort to go out, even for little walks, but only when my symptoms have decreased somewhat.  At times the decrease is only slight, but its enough to get me out the door.  Its taken a long time of pushing myself like this, and I've been on some horrendous walks and shopping trips, but now it looks like I can go out fairly comfortably mid to late afternoon without too many problems, I even managed an early morning walk the other day and that was a huge surprise, it wasn't pleasant though.

 

I'm not saying that going out and doing stuff is pleasant or enjoyable or that I have a nice time, the derealization, akathesia and panic decrease, but anhedonia then takes their place, but at least I'm able to get out an do some of the things I need to do sometimes, without it making me worse.  I've managed this by noticing my patterns, pushing myself very gently when a small window opens, but protecting myself from more stress when symptoms were elevated.

 

Windows can be part of the tapering process, especially if you are in the holding stage.

 

If you go several weeks without changing anything at all and not taking any extra medications, if you pay close attention, you will most likely notice your own daily pattern, then you can start to work with it.  For example, if your symptoms generally decrease in the afternoon like me, you could start going outside every day about the same time, as much as you can manage, even if you just step out the door and come back inside.  You could do a little more each day.  Walk a little further.  Then maybe sit in the car.  Then have someone start the car with you sitting in it.  Then drive out the driveway and back again.  Have someone drive you around the block.  Before long, you will be able to make an appointment and have someone drive you there.  Maybe go for a test run before you actually make the appointment.

 

 

How often have you been taking Ambien?

 

Had been sleeping OK for quite a while, then suddenly went 30 hours without sleep and used it once, then another 30 hours and used a small amount again and slept a little bit.  Now can't sleep at all.

 

 

 As you wrote above, you were sleeping ok for quite a while.  So you do have a pattern of windows with your symptoms.  Then it looks like you experienced a sleep related wave, panicked and took medication, which most likely started a rebound reaction.  If you had rode out your wave of insomnia with non-drug methods, it wouldn't have exacerbated the problem.  Many members here have terrible problems with sleep, but just do the best they can without taking more medication.  MammaP and Mr Anxiety are two I can think of, perhaps reading through their threads may give you some ideas.

Thanks for the replies and encouragement, everyone. Things seem to have been getting better in the past few days (been sleeping OK and getting some exercise), so I will try to stay positive and hang in there!

 

 Two months ago you had an obvious window, were able to sleep and even exercise.  This is evidence of a pattern of recovery.  I know how difficult it is to remember these better moments when we are feeling awful again, I also go right back to thinking its hopeless, but I do the best I can to have faith that its a pattern and it will get better again, much slower than I would like, but that's just the way it is.

 

How was your health before the flu-like illness? Anything a bit odd, any meds? Did any of your symptoms start before then?

From reading your thread, my take on this is that you were fine before you got this flu-like illness, although I could be wrong.  I also remember reading that you even almost fully recovered from it with a kind of treatment......

 

"I also spent some time doing vestibular rehabilitation therapy, and the combination of the two actions did pay off – by early 2009 I was virtually free of vertigo, panic attacks, and derealization. It was the best I had felt in a long time. I wasn't 100%, yet, however, so the psychiatric nurse practitioner I was seeing at the time suggested I try a bit of a “non-addictive” antipsychotic called Zyprexa in lieu of the Seroquel. I started on 2.5 mg. This was a big mistake."

 

.... and that's when you started to deteriorate again.

 

I may have missed something or perhaps you did have symptoms before the flu-like illness, but it looks to me like your problems began with this illness, but you were recovering nicely but now its drugs and withdrawal which are causing you to be ill.  Your nervous system was probably already weakened by the original illness, then all the drugs and changes caused more and more stress, along with the stressful events you have been through in your personal life.

 

I'm sorry I don't have any easy answers, but I do think you can recover.  You were close to recovery before and you do have some small windows.

 

We are here to support you, but you have to want to get better.   Knowing that recovery is happening by paying attention to every little improvement, no matter how small, will help.

 

 

[SorrowExpert]

 

Hopefully others will chime in, but I think slowly, in tiny increments, raising the Zyprexa has a higher likelihood of helping than hurting, but definitely don't go up and up if it feels worse.

 

Trying to chime in, but I'm not sure I have anything helpful to add.  Once again I read back through your thread SE.  Its obvious you are suffering greatly and should never have been put on Zyprexa in the first place.  I think you have been having a bad reaction to it, but now are also getting withdrawal effects along with rebound interdose symptoms from irregular use of other medications.  Its all become very complicated.

 

I managed to take a walk today, I don't know if that counts? I never really get any "windows" of the type people describe, except for maybe a brief period in the fall.  I was under the impression that people only got "windows" when they were completely off medication for some time

 

But then on the other hand, you do have brief periods of improvement.  You left the house and went for a walk less than a week ago.  Your agoraphobia is not constant.  I'm wondering if there is a pattern.  You have written that its connected to derealization.  I completely understand that because I'm sure most of my agoraphobia is connected with this symptom.

 

For me, all of my symptoms are worse during the morning and most of the day, but they decrease sometime mid to late afternoon usually.  If I go out when the derealization is particularly bad, then it seems to re-traumatize me.  So I've been making an effort to go out, even for little walks, but only when my symptoms have decreased somewhat.  At times the decrease is only slight, but its enough to get me out the door.  Its taken a long time of pushing myself like this, and I've been on some horrendous walks and shopping trips, but now it looks like I can go out fairly comfortably mid to late afternoon without too many problems, I even managed an early morning walk the other day and that was a huge surprise, it wasn't pleasant though.

 

I'm not saying that going out and doing stuff is pleasant or enjoyable or that I have a nice time, the derealization, akathesia and panic decrease, but anhedonia then takes their place, but at least I'm able to get out an do some of the things I need to do sometimes, without it making me worse.  I've managed this by noticing my patterns, pushing myself very gently when a small window opens, but protecting myself from more stress when symptoms were elevated.

 

Windows can be part of the tapering process, especially if you are in the holding stage.

 

If you go several weeks without changing anything at all and not taking any extra medications, if you pay close attention, you will most likely notice your own daily pattern, then you can start to work with it.  For example, if your symptoms generally decrease in the afternoon like me, you could start going outside every day about the same time, as much as you can manage, even if you just step out the door and come back inside.  You could do a little more each day.  Walk a little further.  Then maybe sit in the car.  Then have someone start the car with you sitting in it.  Then drive out the driveway and back again.  Have someone drive you around the block.  Before long, you will be able to make an appointment and have someone drive you there.  Maybe go for a test run before you actually make the appointment.

 

 

How often have you been taking Ambien?

 

Had been sleeping OK for quite a while, then suddenly went 30 hours without sleep and used it once, then another 30 hours and used a small amount again and slept a little bit.  Now can't sleep at all.

 

 

 As you wrote above, you were sleeping ok for quite a while.  So you do have a pattern of windows with your symptoms.  Then it looks like you experienced a sleep related wave, panicked and took medication, which most likely started a rebound reaction.  If you had rode out your wave of insomnia with non-drug methods, it wouldn't have exacerbated the problem.  Many members here have terrible problems with sleep, but just do the best they can without taking more medication.  MammaP and Mr Anxiety are two I can think of, perhaps reading through their threads may give you some ideas.

 

Sleep has stopped again completely...I haven't slept in 30 hours again.  I feel like I'm dying and I don't know what to do - my nervous system is so hyper excitable now, like delerium tremens.  All the drugs have turned on me.

[Meimeiquest]

How much Zyprexa have you taken? What doses have you been on this month? I know this is really, really tough....

[Petunia]

When I was having a very difficult time with sleep, I would listen to relaxing talks and meditation through headphones, mostly I found them on youtube.  Sometimes I would manage to doze off to sleep, but other times not.  It was a very difficult time because I often had to get up early in the morning for appointments with building contractors, but if I had managed to rest and relax for most of the night, even if I didn't sleep, it was enough to get me through the next day.

 

Have a look through this section on sleep problems, there is a lot to read, but you may find something which you would like to try.

 

http://survivingantidepressants.org/index.php?/topic/555-tips-to-help-sleep-so-many-of-us-have-withdrawal-insomnia/

 

 

[SorrowExpert]

How much Zyprexa have you taken? What doses have you been on this month? I know this is really, really tough....

 

I'm at 1 mg and holding there.  Got 4 hours sleep last night, so there's that.  It is really tough, thank you for your support!

 

I wish there were some kind of adjunct medication that I could use to help the tapering process, because I think it's just too hard doing it directly.  I pray this recent episode hasn't done any permanent damage.

[bubble]

I'm so happy for your window!

 

Writing from my phone so can't paste to link to Windows and Waves pattern of recovery but will do so later. The fact that you have good periods replacing bad ones and then good periods in turn being replaced by bad again is a sure sign you are healing!

 

Hugs,

bubble

[SorrowExpert]

I'm so happy for your window!

 

Writing from my phone so can't paste to link to Windows and Waves pattern of recovery but will do so later. The fact that you have good periods replacing bad ones and then good periods in turn being replaced by bad again is a sure sign you are healing!

 

Hugs,

bubble

 

But the drug is just too strong, I just can't taper it without crashing, and every time I crash I fear more damage is done to the central nervous system.  

[Meimeiquest]

By crash, do you mean insomnia or something else?