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
I checked myself yet again at the hospital. It became my full time job really.
Shame on me, I ain’t strong enough to survive outside more than a few weeks. But is it really my fault?
Not more than 24 hours later, yes you know it, I checked myself out. I wasn’t scared of the environment this time. I liked the room. I even met a couple of people with whom I could have a decent conversation – shout out to K, L, N and N!
My problem was the medical body. My sessions with them were more of open ended questions like in qualitative research. I felt time had no essence to them. Like progress cannot be measured daily.
When I went to London, and I am not being payed to say this – if you only knew how expensive it actually is to get treated there out of pocket – every single word I said was taken seriously. Every little side effect was looked at. I was seen as a person; a real person and not a spoiled brat complaining for no reason.
Secondly, the doctors would not dwell endlessly on what to do. They took calculated risks. Because if they agreed to the status quo then nothing would happen.
I was always reassured and never ever did anyone tell me this drug or this method works for 20% of the patients. I was given hope – in abundance and also had the opportunity to chat with other patients who are now truly healed.
While I was completely fitting the box of patients in the clinic, my individual voice and needs were immediately heard.
That is why I felt I was wasting time at the hospital and that is why I left 24 hours later instead of staying for a whole 10 days.
My business teachers at university always said a good product or service starts by answering a customer pain.
Very well, mental illness is filled with customer pain; be it the patient herself or her family members.
I have been treated and admitted to hospitals both in Paris and Cairo. Although the settings could be strikingly different; there are major similarities.
Patients have little control over the course of their treatment; unless they happen to well read – and still that could be interpreted as a personality disorder.
Here, business people, here is a business model for you to follow. Instead of keeping the one patient coming back for 10 years, you can have thousands of them and most likely very happy ones too. Am no mathematician but get your excel sheets out and do the works. It doesn’t need a genius to tell you where the money is; and coincidentally health too…
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?
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.
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
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 isolatedsymptoms; 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 MaudsleyPrescribing 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 Agitataand 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 …
So people someone was saying why I was committing suicide in ink…
Check this out
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 RepetitiveTranscranialMagneticStimulation; 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.
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.
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.
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.”
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 know the difference.
Dear all, thank you for checking in. It has been over a month now that I have quit all psychotropic drugs.
I hate putting pictures of myself online. I need to do this. Here is me: one in ER while on a cocktail of drugs and one DRUG-FREE on a night out (with my husband cropped out of the selfie for his privacy)…
They scare you…
This is a rather long entry. I will be telling you about how the experience has been. I will also tell you at the end my two cents on my last psychiatric appointment. I will also refer to what I do to be able to manage my withdrawal after almost a couple of year on heavy drugs.
They sacre you…
Ever since this experiment spectrum of emotions, thoughts and physical sensations have been revealed to me ever since.
I am partially proud and relieved. I have this sensation of being in charge of who I am and once again responsible for my decisions and thoughts.
It is not an easy journey. A layer of artificial pain has been lifted away quite dramatically from my being. I discovered the traces of other pain beneath. It was thrilling to regain emotional and bodily sensations again. It is spectacular to be human and mostly to feel like one.
I find myself unable/unwilling to think or plan ahead. I try to live a minute at a time and not to complicate anything. Although I can achieve a wider range of feeling, I prefer to dwell on the surface.
They scare you…
I am prudent. I once read that bipolar patients are always waking on eggshells. I think it is also true for those who suffer from recurrent depression. I worry about the consequences of my feelings and try now to stay at the surface. I think that this is more than anything, a survival mechanism.
Bad dreams have been happening. They are too vivid for my liking. They are probably the most vivid I have had to memory. Why are they so scary? Because they are not based on fantasy. They surprise me as logical, and this is why all the while during the nightmares I think that I am actually loving those moments.
Tears are close by. Menial tasks requiring mental skills are tough for me. I need to concentrate with all my mind. Adios to multitasking. One thing at a time.
My weight is soaring. As big as a whale; as if I have eaten every problem I have ever thought about.
Together with my limited mental capacity, I feel short of who I am.
They scare you…
My 38th birthday is around the corner. I am worried about the forties, worried of turning 41 – the age at which my mother died.
I think of her a lot lately, with more understanding. Though my turmoil was partially due to my childhood with her and to her sudden death, my illness has taught me to see our relationship differently.
I understand her now more than ever. I feel for her suffering and instability. I cherish her ability to have taken care of me to her best; with her limited means. I don’t blame her anymore. I couldn’t have done better myself.
I hope for the years to come to be able to see my illness as tough-love; as a blessing in disguise.
They scare you…
A disturbing fact though remains.
I had gone to my latest appointment with my psychiatrist 10 days after quitting. She was of course against it. She said quitting suddenly has severe consequences. Depression of course was a runner up. I was also told that lithium won’t probably work again should I need it. Rebound is possible, no one knows when, how or for how long. It would be very dark I was warned.
Perhaps I could live with all that. Nothing she said was new until she told me something quite harsh.
They scare you…
Knowing that I write about mental illness, she told me that I should put a warning when speaking about going cold turkey. She said: ” Mothers who kill their children and then commit suicide do that because of depression”.
They scare you…
She left the sentence hanging in mid air; either to refer to potential readers who can harm themselves by listening to me. She could have also meant me; I was left to choose.
Besides being deeply offended and utterly shocked, I felt a lot of self doubt that I now regret. I dwell on this almost daily.
I say with utmost confidence – something I generally strongly lack – They scare you…
Bullshit; No one can pretend to know you better than yourself.
Bullshit; Stop stigmatizing mental health patients; you of all people should know how to weigh your words.
Bullshit; No! Our loved ones; for that fact my children are a red line that no one is allowed to cross.
Bullshit; no! Crying, anxiety attacks, binge eating/ drinking, nightmares, dark thoughts, are and were never ever directed to anyone else.
BULLSHIT!!! STOP!! I will not let your narrow single sided knowledge of an incredibly complex topic such as the human mind dictate how I should live my life.
I tell you my dear reader. I warn you like she asked me to do not to quit cold turkey. But I add to that; this road is not to be travelled unless under certain circumstances that are very complex.
You and you alone can decide how to live and what to do with your life. You alone will know when or when not to quit. You alone know down deep inside your motives for such a decision. And most important of all, you alone know if you are god forbid dangerous to yourself or worse to others.
Whatever you do, do not quit believing in yourself medication-free. Yet better, do not quit the hope for one second of being illness-free.
Without any conspiracy theories, let us not have the world of pharmaceutical companies tell us how to live or love our children!!
I do not deny that yes unfortunately such miseries do happen. Yet, millions of millions live and die without committing any of such acts and hopefully you and I are no different.
Should you decide to cut off or quit. I urge you besides doing it at the right time and weighing the benefits and the doubts as well as the consequences, TAKE SUPPLEMENTS.
I have a routine filled with micronutrients, vitamin D, omega 3, probiotics, and amino acids. I also use essential oils for withdrawal pains such as headache, back ache and insomnia. They help me a lot. All this is due to my dear husband. He has done incredible research on the topic and I do take all my supplements religiously. On most nights I sleep, and on most days I go out of the house.
Please I’d urge and beg you, if you are reading this before you go to your first doctor’s appointment because you are suffering, considering an alternative route. Do your own research, ask a loved one to do it for you. Just don’t start with antidepressants, mood regulators and benzodiazepines. You might just need iron and vitamin B complex instead. So take charge and do your homework. There is an alternative route – less travelled nowadays yes but real all the same.
No one will care when you have a zillion side effect but you.
I will be writing another follow up to let you know how things are progressing. Feel free to comment or ask questions…