Bipolar, Quetiapine & side effects

Like many days, I was thinking today long and hard about mental illness. How it infiltrates the body and gets deep into it before you even know what hits you.

You wake up one day and you don’t feel fine. You probably ignore it. How long does it take to develop a mental illness? A few months? A few years? Extenuating circumstances? What do you think?

I was obsessed, trying hard to search in my memory looking for the one moment where I became bipolar. Was it a moment to start with?

I recall anxiety, difficulty coping with everyday demands, depression, but I don’t recall mood swings. I also don’t recall a moment or an incident.

Mental illness is not a common cold. It creeped on me a little by little until I was totally submerged and couldn’t breathe. Only then did I know I was ill. I did not have the tools to detect it earlier. How about you?

This is why recovery is difficult. The longer the illness before detection and treatment (whatever the sort- especially if they screw you up) the longer the road to wellness.

Now am better. At least I know what is wrong with me. I am taking meds that work, albeit the fact that they do have side effects. There is no drug in this world that has no side effect.

My thyroid is inactive. So I take a lot and I mean A LOT of levothyroxine without much trouble. My main problem is Quetiapine of which I take 700 mg. I have gained so much weight on it and can’t lose it. It makes me lethargic, slow, drowsy, and I could sleep on it 14 hours plus naps minimum.

Yes I don’t have mood swings. Yes I am not anxious. Yes I am not depressed. Yes I am not hypomanic. But I have no initiative, my IQ is probably half what it was before, I am just plain yoghurt.

Yes I know all them drugs alienate you. But this one is so subtle. Or maybe it is the high dose that is making me unaware of how different I have become.

You know I just want to be me. I haven’t been me since 2016 when I was 36 and now am 39 and am still this other person I don’t know.

Do you feel the same? Are you on Quetiapine? Are you suffering from its side effects like me? Are you thinking of tapering off? Are you scared? Did you do it? Is the grass greener on the other side? Your experience is highly appreciated here from a fellow survivor to another

TBC

Capitalism and bipolar disorder

My illness relates to many many factors. It is my upbringing and my biology. It is society, it might even be fate.

My illness maybe relates the most to a lifestyle, no; to a mode of being that I am not the only one to have created but surely had to abide to. My illness is so common you would be surprised. My illness is “in” these days. My illness is a mutation, a mistake if you would like. My illness is a blessing as much as it is a curse.

I get to the downs of the deep blue and sometimes I stay afloat. Sometimes I even catch a boat, a sailboat- nothing too fast. I wonder and I ponder about my existence and yours. I shed a few tears and even pop a few pills.

I always end up where I started with mixed feelings about everything. Nothing is my favorite as how should I know? My illness changes my mind as I grow.

Something is constant amidst this storm. I know there is a malfunction, that much is true. Why does it relate to inequality go ahead and ask me. All is a competition, life has become a race. We run around all day seeking a bigger dream. I don’t get there and you don’t either, but why does she? Born in here, studied in there, oh that is her family? Where is my choice in all of this? Where is this leading me? Achieve and fail and fail to achieve. I ask myself why I stopped dreaming. Those images were not mine but yours, so why keep them in the first place? Illusion, delusion, materialistic being. This is not whom I should be. Why wake up and swirl like a mouse? That’s when I decided not to leave the house. I felt immense fear from life; how on earth can I win this race? Exclusion, demotion, gender roles or nationality?

TBC

When the dream catcher fails to catch all your dreams

So I went all the way to London. I am from Egypt you see, I had to pay good money for a visa, and lots more for accommodation and living expenses. One hefty sterling pound costs 23 Egyptian pounds. You get the picture.

Any-who. We travelled, out of pocket. We did everything by the book. We stayed in the nicer areas. By we I mean my husband and I, and later my sweet father. We ate out, he took me shopping. He transferred money to me weekly even though he was already paying for most of the stuff.

He isn’t a millionaire. He isn’t a business man. He is just a loving father.

Twenty five days we stayed in London. Day in day out. My husband visited every single second he had. He took me out even to the west end.

I cried in their arms and laughed some more.

I was not prepared however for what the doctor told me one fine morning.

He told me Nour you have to go home. I didn’t comprehend. What home? Like the place we are renting out here in London? No? Home as in Cairo? As in the Middle East, pyramids and all? Why!! I am following your words by the book. Doctor Zamar your words are my command like literally.

Why summon me and tell me this?

It figures the bloody Prozac is giving me horrible withdrawal symptoms. He can’t treat me with them taking place. It is nothing personal he said but rTMS won’t be efficient. Nothing would work.

His plan was to fly me home and give me back Prozac and instead of weaning me off cold turkey; to tapper it off gradually.

Trivia: do you know that they don’t sell Prozac in smaller doses than 20 mg in many countries?

Guys, people of the pharmaceutical world stop lobbying against recreational drugs and kindly start putting your **it together with psychotropics.

An Arabic word comes to mind to describe the situation “Haram”; it roughly translates to “god forbidden”.

God forbids this bullshit companies are selling to us the millions of us this shit as pain relief…

God forbids you to prescribe us shit that will literally make us want to end our lives

God forbids you from making zillions hurting us and also making us dependent on you with every cell of our body.

We don’t need strong will to quit the poison you are selling us, we need a miracle.

I was willing to undergo Electric Chock Therapy ECT- which would basically erase what is left of my poor memory- just to get rid of the effect of the antidepressant in my body. That my friend is like asking me to deep fry my hand to get rid of a mole. It is that illogical. But I was willing to; cross my heart. Doctor bless him said it would be useless.

So now after quitting dear Prozac – the sweet antidepressant that is almost given over the counter – and I swear to god given to “normal” people who just want to lose weight; I am back to square one. I am taking it again. And will reduce the dose every 10 days.

I can’t give you more feedback about my new treatment as it came to a halt.

But for the love of god, for the love of Jesus, of Moses, Mohamed, and Buddha; NEVER take antidepressants if you might be suffering from a mood spectrum disorder.

TBC

Raw on hypomania

3:15 Am, four Xanax later, one hour on SoundCloud, about 15 cigarettes, two herbal teas, some half pack of almond thins, an Instagram and a blog post published, and as sleepless as a toddler who just won’t nap.

I wake up nightly between 2 and 4 AM. It is a killer, but it is the period I feel the most creative- unstable but creative.

I can almost smell coffee, its rich and dark brewing aroma inviting me to take a cup. Just a sip. I can also see this gin tonic fresh and calling my name. I don’t want to eat, I want to binge drink! Isn’t that a word ? It is now.

I cannot have coffee or gin as a matter of fact. Doctor’s orders. No stimulation. None. No sports. Mot even hot yogaZ Not that I was your athlete or alcoholic. But still, breaking a sweat, sipping a nice drink…

If I had hold of a car now, if I knew how to drive on the “wrong side of the road” here in London, I would have gone for a cruise. The type of ride you have when you are what 19? Windows rolled down, music loud, singing along, no care in this world.

But am in my pjs, sneaking out in the cold to smoke yo my cigarette with my yogi tea and slippers with my toes freezing like a good girl.

No make up tonight. No tight dress and high heels; first no freakin tight dress would fit now and no heels in the suitcase.

But what is a woman without day dreaming? I have lipstick. I can do lipstick at 3 am or full make up if I want to.

But now the ride is coming to an end. SoundCloud is asking me “how deep is your love?” And am like you have no idea how deep is my love. My eyes are opened and I have devotion and it is bigger than the ocean.

I am making sense, don’t give me this look. Am in Ibiza but in primrose hill and that is totally fine.

Am managing my hypomania which was just suicidal ideation about 5 hours ago. Screw that, I want to be by the beach. Close my eyes, walk on the sand. I am in control of my emotions or not. I can run or swear. Heart rate is my affair. I stimulate and get stimulated as much as I need or wish or both.

Honestly. This is my first hypomanic post. Raw, unedited by my subconscious who wants me to look wise and smart. I just want to party… was it all a dream ? Back to my herbal tea

Please no excuses

Live whitest you can

TBC

Part one: On Guidelines for treating mixed episodes and rapid cycling in bipolar disorder – Beacons Of Hope: Thyroid hormone replacement and rTMS treatment.

My problem with my illness is not my illness per se, it has always been how the medical community thus far dealt with me as a series of isolated symptoms; instead of seeing me as a whole person.

Things have been moving on though. Let me tell you my story with this new treatment am on.

But before that, we have to talk diagnosis. We have to talk guidelines. We have to talk knowledge.

Looking back, the past three weeks seem like months.

My beloved husband researched and researched my condition over and over again. He wouldn’t surrender or admit that I won’t get better. He believed that there is a way out and that I could be cured. At least he told me “let’s have the honor of trying”, bless his pure heart.

Less than three weeks ago I was self admitted to another mental health hospital. I left the very same day. Surprise! Though practically no one understood, everyone accepted, believing I had some internal compass that points to truth. In fact, I was too restless for a single room and too “aware” to stay in a ward.

In a parallel world my husband had found a doctor in London at the London Psychiatry Centre who had very convincing arguments saying that he could treat my condition. In fact he already successfully helped hundreds like me. This brilliant man is called Doctor Andy Zamar. His attitude, bedside manners, and ultimate responsiveness to his patients make him deserve my deepest respect regardless of the outcome of my ongoing treatment. He doesn’t believe in the status quo and he bothers to read what

have written before him.

We first had a FaceTime consultation during which he made me read some research he had gathered regarding bipolar disorder. Specifically, he wanted me to read in black and white as he said how wrong it is to take antidepressants when one has a mood disorder. He made me read out loud the Maudsley Prescribing Guidelines in Psychiatry for those suffering of rapid cycling. It said loud and clear to “withdraw antidepressants in all patients”.

That my friend is an interesting finding. I have been given antidepressants by the medical community that treated me in the past three years. In 2017 Effexor led me to the emergency room trying to quit it as it was impossibly painful to deal with its withdrawal symptoms. Mind you it was done under medical supervision. But that is another story.

Later on in 2018 I began self medication when I quit lithium by myself – which interestingly I discovered does not work on its own in my particular case as per the guidelines. It has also lots of side effects I could not deal with. So I self medicated and started Prozac 20 mg for 7 months. I did that because I thought it would be a safety net that won’t let me fall into deep depression.

I was wrong, I couldn’t have done myself more harm unknowingly. I did rise into hypomania which inevitably led me to deep depression. When I went to see doctors just before meeting Dr Zamar, they advised and prescribed an increase in Prozac to 40 mg and this is when hell broke loose.

Doctor Zamar diagnosed me then with ultra rapid cycling bipolar disorder otherwise unclassified. I had hypomania turbo charged, as he explained with depressive content. Talk about suicidal thoughts!

Again I read during our call what described my state. Doctor Zamar was not reinventing the wheel. The paper is called Melancholia Agitata and Mixed Depression [Koukopoulos et al. Acta Psychiatr Scand 2007: 116 (Suppl. 433): 50-57. The paper is more that 10 years old!!

So on page 52 here is the “clinical picture of agitated depression” – it was describing me in a nutshell …

Melancholia Agitata and Mixed Depression
Melancholia Agitata and Mixed Depression p.52

So people someone was saying why I was committing suicide in ink…

Check this out

Melancholia Agitata and Mixed Depression
Melancholia Agitata and Mixed Depression p 53.

The last time Doctor Zamar prescribed antidepressants was in 2004. Say what you may. But isn’t it a million percent better to be safe than sorry?

This is a heavy post I know.

My final words are those of hope. Now that we know what not to do, the action he proposed is derived from new research based on thyroid replacement therapy and rTMS.

The treatment combo am doing is that I take on one side Olanzapine known as Zyprexa which is an atypical antipsychotic that is supposed to calm my hypomania.

Secondly I do rTMS or Repetitive Transcranial MagneticStimulation; a treatment that not only has enormous success rates for treating depression but it is virtually side effect free.

Last but not least, Doctor Zamar is using Precision Medecine Nd treating me as a person. We do weekly ECGs and blood tests. He takes my side effects seriously and he doesn’t brush them under the table. He listens. Mind you this post could sound like praise to him, which it is. But listen my friend, it is to everyone of us working with people. Stop being an ear and nose doctor and look at true bloody person you are treating.

At this clinic they do take swabs to send for genetic testing to stop wasting your time. As their website says there is no “one size fits all”. Genetic makeup therefore is very important in deciding treatment, knowing what works and what won’t and also knowing what would be tolerated. In psychiatry this saves light years.

I will be staying explaining in my following post the thyroid replacement therapy.Meanwhile I urge you to read this beautiful hopeful article published on their blog: Bipolar News – Millions could benefit from bipolar breakthrough #worldfirst

TBC

I am committed

I am committed to coming back to this very hospital

I am committed to receive every form of therapy there is under the sun

I am committed to doing whatever it takes to raise our children, see them graduate and organize their weddings

I am committed to loving and honoring my immediate and extended family in every possible way

Meanwhile I am finding my happy middle

It is a mirage

But I need to keep on looking

I will check out tonight if it is the last thing I do

I will come daily as an outpatient

I am committed to heal

I am committed to survive

I just checked myself in a few hours ago and now I want to run through the iron gates and never come back.

I cannot deal with my thinking, my needs, my wants, my moods.

Is this a magic spell?

Get me in here

Get me out of here

My patience is nonexistent and my insight is blurred with my tears.

End this torment for I am at the end of my rope

This song is on a loop and it won’t stop

TBC

Worry of hope – rapid cycling

It’s 5 am and I cannot sleep.

I am angry of myself. I am angry of the world. I am angry of hope.

I am supposed to try a new treatment soon. My mood changes more than I can handle. I am up and down at the same time.

I put on my trainers and went down for a walk.

Am writing and waking while listening to music. That is how restless I am.

I am worried it will fail

I am worried I will fail

I am worried I will fail them

I am worried they will fail me

End up my post with the usual

God grant me the serenity to accept the things I cannot change

The courage to change the things I can

And the wisdom to know the difference

TBC

You must know

Know that I love you since before I was born

Know that I loved you since before you were born

Know that you are my every reason for being

Know that I want to leave to set you free

I try and I fail and I try again and I fail and fall harder

Maybe this time it will work

In the world of rapid cycling

Hello everyone. Bla bla bla yes I haven’t written for a while, miss you, etc.

You know it is not me who is inconsiderate or rude: am rapid cycling.

Say what? Say one day am high as a kite (a small kite since am bipolar 2), and the next am digging a tunnel to the the after life (does that even make any sense?)

You get the picture. Am a yo-yo, I am a roller coaster, a bullet train with bad breaks.

I enjoy my ups and do accomplish a lot; especially if you count shopping as an accomplishment. I spend hours without eating (big high five since I tend to feed like a newborn every 2 hours). I even live on 5 hours of sleep and I am Eeyore on any other day.

Woke up at 6 am today (weekend here on my side of the world) and hoped into my trainers and on to the kettle and to my smokes.

Am sociable, am pretty, am smart and talkative. I love it.

I wrote this down to me Nour. Yes to me, for in a few hours I will feel like dirt is better than me. I will feel empty and useless and I will become a burden. I will get back to staring at the ceiling and doing nothing but dealing with suicidal ideation.

Today however I will kiss my kids, a lot and lots more. I will go for a long walk like the book says. I will have lunch with my beautiful loving family and I will dress to impress. I will put on my make up and my new earrings. I will take a selfie or two and hashtag them to mentalhealthawareness.

Meanwhile my rapid cycling friend; I freakin feel you. You are my hero.

Remember, for every down there is an up coming and heck yes we shall ride the wave and rise to the moon.

Bless

TBC

Choosing to live with the side effects of psychotropics – a life changing decision…

I saw my psychiatrist yesterday.

I told her about my “attacks” and she explained.

She told me that hormonal changes in female bipolar patients tend to send them over the moon sometimes. So what I am going through is not surprising. It is not a hormonal problem per se, it is just a confirmation that I have a mood disorder.

I asked if there is any biomarker that would tell us if I need a hormonal treatment to fix my mood. She said that there is currently no information on this. Surprise? Not really. So the only marker hormones wise is that of the thyroid gland functions. My numbers are not perfect, but not alarmingly different to cause such an imbalance.

My session was important despite the “negative” results. I now know that I need to make a big decision.

My doctor asked me about whether stopping lithium was due to hypomania and I said it was not. I would do this over and over again. The changes, the personality changes that most psychotropics cause me are just unbearable- to me. Again, this is such a personal matter that it would be straight stupid to advise anyone to quit or not. I am not preaching anything. I am just sharing my own journey, which might or might not be similar to yours. What is sure though, you might have gone through similarly difficult choices to make.

We agreed that my life as it is now is not fulfilling. The unpredictability of my attacks renders my illness a disability to me and to those around me. We are unable to plan anything. I struggle to be an adult, an independent person who requires little or no maintenance. I struggle to be there for my children as a full time mother. Career? What is that sir! Sometimes having a shower is already a challenge to me.

Having said that, my worst fear is hurting those around me. Till when can they deal with my unpredictability.

Till when will my husband take days off work, or leave the house with a feeling of apprehension not knowing if he will find me home when he gets back.

Till when will I have my father leave everything and stick around to be here just in case I cannot deal with the children. Till when will he hop on and off plans to come to an emergency situation beyond his or my comprehension? Till when?

So fact one; we know this cannot go on.

Fact two; there is no clear solution.

My dear doctor whom I respect so much suggested that I add a new psychotropic to my daily dose of Prozac.

Psychotropic drugs are medications that affect your central nervous system, changing how your brain processes information, such as altering your mood, thoughts, perceptions, emotions, and behaviors. Most psychotropic drugs are prescribed by your therapist or health care provider to treat a diagnosed mental illness, such as bipolar disorder or borderline personality disorder.

https://www.verywellmind.com/psychotropic-drugs-425321

You see I don’t have a conscientious objection against drugs. No, I don’t. The thing is with most drugs I feel alienated, weird… I twitch, I get nightmares, I get lethargy, restlessness, anxiety, and sometimes I even have suicidal thoughts that unfortunately led me to the emergency room more than once.

She said the new drug- Abilify– could help regulate my mood. The idea is to take it at 5mg – a super low dose – to keep my curves from skyrocketing or dropping at the speed of light. Sounds good yes. I would have to wait a few months to monitor the effect of Abilify on my mood and on my menstrual cycle.

Will it work? We have a fifty percent chance it does. Ok, side effects? For starters, it is prescribed to children. How bad could it be?

Then Surprise surprise, they said when they put it in the market that it does not make you gain weight. Oups! Mistake, she said it does in many patients and my readings confirmed a nice 10 to 20 kilograms of extra weight per year. Maybe at different dosages, but still. I won’t be able to tie my own shoelaces by 2020.

Ok. What else? Oh it varies greatly she said from one person to another. Reading suggests that the worst is in the beginning; like vomiting and the like. That does not scare me. What really scared me is that patients on this drug would complain of very low energy and of restlessness or need to move.

According to the official site of the drug,

ABILIFY may cause movements that you cannot control in your face, tongue, or other body parts. Tardive dyskinesia may not go away, even if you stop receiving ABILIFY. Tardive dyskinesia may also start after you stop receiving ABILIFY.

https://www.abilify.com/important-safety-information.aspx

They might get also compulsive behaviors such as gambling and binge eating, cholesterol and anxiety.

How are you supposed to fight depression with all this extra weight and without any energy, with twitches and compulsive behavior? Don’t tell me stop searching the Internet. I did differ from a wide spectrum of side effects before. They are as real as it gets.

Her idea is that my Prozac would have a counter the side effects of Abilify and things would balance out. Perhaps…

So my dilemma is simply the following:

Should I risk living with these unpredictable cycles and watch myself and my family losing our minds slowly; or should I take the drugs and lose myself little by little and become a deaf note floating around in a soundless world?

Can you relate? Did you go through the same? Can you throw me a bone here? What did you do? What would you do?

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to kno
w the difference.

TBC

If I were

If I were at the hospital

I would wear my pyjamas all day

I would say good morning to everyone

I would wake up on time

I would have breakfast at the communal table

I would go for a smoke when the nurses say so

I would wear a nicotine patch To get me through the day, and I would be allergic to it

I would use the communal shower and dry up with a bed sheet; I would find hair everywhere and stay with my slippers on

I would wait for the doctor to pass by and say the daily bla-bla-bla;

I would play Sudoku- pen and paper sir not online

I would stare at my family’s portrait hung on the window and imagine them touching my face

I would move my chair around to be in the sun, seeking emotions and failing to find none

I would be disconnected; off the grid and not feel guilty about it

I would pretend it is doing me good to be here

I would take my blood pressure and temperature every day

I would talk to others about side effects of this or that

I would fancy getting better

I would know it is good for me, it has to be; it better be

I would feel guilty about the kids, my husband, my father; my kids, my husband, my husband, my husband, my father, my father, my father, my father….but my kids…

I would wait for 2pm when visits start, no no tears this time

I would wait for 7pm when I can call the kids and ask them to sing me a song, sometimes they would

I would give them imaginary baths and diners

I would blow imaginary kisses and I would make belief that I am tucking them to bed

I would kiss my husband good night and say a silent prayer, god let tomorrow be normal – one more day

I would beg for the drugs to black me out at 8pm

Dinner would be sprouts and more sprouts. Some borrowed olive oil here and some salt

The other day I took the kids bowling and felt so self accomplished just as if I landed on the freakin moon

I am sitting by the louvre sipping my Bloody Mary with tears

People are standing up here and there trying to get a perfect picture

They bend and jump into strange angles to look like the pyramid is on the palm of their hand

It is all make belief, looking for the perfect moment

A tour guide has an umbrella up for everyone to follow her

Where else would they go I wonder? Isn’t this the perfect moment? To follow someone without thinking? Tick this box and that one. Been there, done that…

We talk and talk and talk and talk

We shut up and up and up and up

We should know better

I am writing compulsively, but you don’t have to read me

It is building up

I know myself, I wish I didn’t

Solve it; for you god brought me here in the first place

No shame; maybe some

No regrets; just a few

Oblivion where are you?

TBC