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

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

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

The experiment – on being human…

I have to document what I am going through. It is equally possible that I have done the boldest or the stupidest decision. I quit three medications cold turkey. Prozac 20 mg, lithium 600 mg and Temesta 1 mg.

I did this without the knowledge of my psychiatrist; I even postponed my appointment with her not to get influenced.

I know what science says. Don’t quit cold turkey whatever you do. I know. Not to brag, but I quit before for other reasons, other drugs that were extremely addictive and I survived. Yes I almost died, but it was totally worth it.

Question now is how long will this honeymoon phase last before withdrawal kicks in? What is the difference between withdrawal and the side effects that I am going through? The big question is, why should I keep on taking drugs that do not alleviate my pain and give me a bundle of other things to suffer from? The question is, when do you say enough? When do I say I know my body and I know how it functions best?

Illusion or reality. What am I expecting now? A miracle? No, I so do not believe in those. I am just humbly aiming to get back to my initial problems; to my initial depression before psychiatry got involved.

I am a good patient. I am quite reasonable. Yet, and I repeat, why take drugs that make me sick?

I refused to draw a comparison between cancer and mental illnesses because I thought they were very distinct. I was wrong. I thought more research went into cancer: true. I thought cancer is a more pressing predicament. Yet, cancer patients sometimes reject treatment. Families of deceased cancer patients often swear the medication is the reason behind the death of their loved ones and not the illness. Patients who go through one cycle of treatment and sometimes do not accept another one. Yes, they would rather die; or live?

This leads me to my main two points here. One as a patient I have a choice. Two, quality of life is more important than life. Why else would euthanasia be legalized?

All I know is that part of my remaining brain is telling me I have to listen to myself. I prefer my own illness to that one artificially induced and resulting in neurological and neuro-chemical imbalances in my body.

I simply want to know why I am crying when I do. I want to stop twitching. I want to look in the mirror and see me; the fat or the ugly. It will be me and not some alien inhabiting my body and taking random decisions on my behalf.

Risk is part of life. We all make equally good and bad decisions. Only time will tell. The worse that could happen is returning to the status quo. At least then I would know my human limitations and will stop complaining. Wouldn’t you try if you were me?

TBC