Today is a happy day. I come with message of hope. I want to tell you that there is a possibility of getting better.
I have been well for over 8 months now and this is the longest symptom free stretch I live so far since I got ill.
It might not seem much. But my Dr. told me that after 6 months without bipolar symptoms I should start feeling less worried. It means I could start relaxing.
I want to tell you my medical regimen – I take 750 levothyroxine daily and supplement with omega 3. No more antidepressants, no more anxiolytics.
Bipolar is not treatable with those.
I do rTMS now as maintenance, at least twice a year.
My treatment has been life changing but it would have never been possible without the help and daily support of my family. My amazing father and my husband nursed me like a newborn. They believed in me; they knew I would get better. I am blessed to have a very solid support system with my immediate family. My mother in law took me in like her own daughter.
But in this post I want to thank one person specifically- for without him, I wouldn’t have been able to make it.
Hassan – you are a saint. Your patience and love were and are unconditional.
If I am alive today it is because you trusted my judgement despite my illness that the medial system as it is today is wrong yet still fought for a solution.
Night and day, with the children around us you would make me laugh, juggling work and trying to find a way out of this endless night.
Today, I would like to say that I am simply happy and no longer depressed.
Thank you for your endless love and unconditional love.
You were my sanity when my thoughts were gone.
You taught me that impossible does not exist.
I would like to take this opportunity to thank everyone who reached out during these difficult times and wrote to me or called me. Each and every single message brightened my day and made a difference; you wouldn’t believe how much.
And now… let me end my post by a quote from Rumi “ whenever we manage to find love without expectations, calculations, negotiations, we are indeed in heaven”
Today I had a routine FaceTime appointment with my psychiatrist. I wasn’t expecting much. We were just going to discuss the usual.
Yet, the first thing he told me
was “I read your blog”.
I was taken back for so many reasons. I had no idea he would have such interest in his patients, or have the time really.
What is interesting is that I had written my last entry on how I am suffering from the side effects of the meds I am taking, especially how I have lost hope, and how I feel disabled mostly because of the antipsychotic quetiapine of which I take a significant dose. Although I had shared this with him before, reading my words seemed to have had a different impact on him I would discover.
Yes. My doctor told me something I would have never ever have imagined any medical practitioner to ever say. He told me I have failed to treat you.
I could not believe what I just heard. First of all we are far from being done. I am still being treated. And I am a thousand times better my dear doctor than the first time I saw you. I cannot even find words to describe the state I was in when I first talked to you and you said yes I will take you as my patient. I could barely speak, yet you were able to translate my pain and understood me.
Today my doctor showed me how he truly listens to his patients. I had talked to him over and over again about reducing the dose of my antipsychotic. He had refused categorically on many different occasions and told me if I did I would relapse. He told me I had to bare the side effects and be patient. He was extremely worried about me.
Today however, he told me that he thought long and hard about my blog piece and decided to change the treatment plan.
He decided to change it to accommodate to my needs and because he had already increased during the past weeks my levothyroxine. [My treatment is based on three pillars: levothyroxine, quetiapine, and rTMS]. I had also a few sessions of rTMS as a back up before this new treatment plan. He also told me that if I don’t respond well to reducing the quetiapine, he would shift me to another antipsychotic. This was all I needed to hear. Hope is the most powerful medicine of all.
I am sharing this story today because it is really a breakthrough on so many levels. I rarely hear of anyone admitting or alluding that they are wrong or even questioning themselves really- especially if they have any kind of authority over you. Two, who has the time to read or listen or care about their patient outside of the 15 minute appointment slot they have? Who cares what they feel, like or dislike? I have seen my share of psychiatrists and usually when I start slightly feeling uncomfortable it means that the relationship is going south and the end is near my friend.
I have all the respect and admiration to you Dr Andy Zamar, a great man, extremely bright and sensitive.
Mind you this is just the top to the iceberg. My admiration for this great doctor has no limit.
I only hope that he has the opportunity to train other fellow psychiatrists.
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
My illness is flagrant. It is clear as sunshine. Bright as a star. Big as a 10 cart diamond ring. Obvious to the naked eye…
Yes it is when I have an episode.
But when I don’t…
It is dormant. Blends with the background. Goes unnoticed. Quiet common. Just like the flue. It is a John Doe..
I tend to forget, for am human. And we humans tend to do so. A lovely quality we have. Makes us able to live, to turn the page.
When my illness strikes back, am always surprised. It takes me a few days to adjust. As if it is the very first time am experiencing the symptoms. All fresh.
The pain is new, yet the depth of the scar is familiar. I remember the fear of falling into the abyss of mental illness with all what it means – more meds, more symptoms, more side effects, hospitalization, days in bed, fear of losing my mind, fear of losing control, fear of finally giving in to suicide…
Yet I know I can’t. Something tells me this cannot be the end. I recall the conversations I had, the notes I wrote, specifically for these moments to remind myself not to give in.
I try to summon my strength, the strength I have and the one I don’t, and pretend to stand up. I rise in my dream above myself, above my tears, above my hospital bed and tell my doctors to let me live some more.
But if you are ill like me, you will soon learn that living isn’t the point really. So what is the point of having a life with such an illness that makes hell a walk in the park? On average I get two good weeks a month and if am lucky we can stretch them to three.
I am heavily medicated, but at least the meds I take do work.
I got PTSD. I am being treated for it, but I feel mostly guilty all the time for how my illness affects my loved ones.
That’s where am at now with my bipolar. I cannot always embrace it. I don’t rise above it. I wish I could say it differently, bipolar is my disability…
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.