The Year Wasted On Venlafaxine

The venlafaxine debacle certainly deserves more attention than just the few lines I’ve allotted to it so far.

The first few days have been chronicled by this blog, but fact is that the side-effects never got significantly better. Nausea, headaches, muscle pain, and paraesthesia became my steady companions. Very often, it made me so sick that I had to lie down two or three times during the day. At every appointment I told the psychiatrist about it: he would either dismiss my complaints as “I’ve never heard about anyone having this problem with venlafaxine before”, or claim that those were not side-effects, but withdrawal symptoms because my dosage was still too low to last all day.

About fifteen months down the road, he finally cranked the dosage up – and that is where the heart problems started. Actually, I was in the early stages of serotonin syndrome, and it felt like I was on the verge of a heart attack. Before the next appointment was up, I had to lower my dosage again without even consulting him, because I just could not take it anymore. Finally he decided that maybe venlafaxine wasn’t for me and that I should try escitalopram instead.

The idea was that I would reduce venlafaxine over the course of three weeks and then start escitalopram. The withdrawal was so terrible that even though I gave myself six weeks instead, I still became bed-ridden. Other than expected, the most difficult part was not when I first started lowering the dosage, but the second to last step, which made me hallucinate.

Imagine lying in bed, sweating, your heart beating fast. Your head hurts, your teeth hurt, your back, your legs… every single muscle is in pain. Lights are too bright, sounds too loud, everything you eat makes you queasy. Your thoughts race and you cannot do anything to calm them down. And just when you think it cannot possibly get worse, you start hallucinating that the walls of your bedroom, the furniture around you, the ceiling above you are pulsating, bending in and out as if they are breathing.
I knew it was the withdrawal – that it wasn’t real – but that didn’t make it any less unpleasant. I cried like a little child: “I want it to stop! I can’t take it anymore!”

I do not want to badmouth venlafaxine, since there are many people who take it with few or no problems. I wasn’t one of them. By now, I am aware that I have problems with every drug that influences the noradrenaline (norepinephrine) cycle; that I am genetically predisposed to react that heavily to them.

However, I harbour resentments against the psychiatrist for letting me go through this for such a long time. He was friendly, but I feel like he did not take me or my complaints seriously – whatever it was, you don’t drag out a treatment that doesn’t help and causes so many problems for a year and a half. And I was too afraid that I wouldn’t get my sick note for the jobcenter if I complained too much, so I didn’t dare protesting too loudly. Even when giving the drug the benefit of the doubt, he should have stopped after six month. Instead, I wasted a whole year of my life on top of that trial period.

Coincidentally, just as I made the transition from venlafaxine to escitalopram, the practice was also taken over by a new psychiatrist. The options were to either stay at the old location and get a new caregiver, or migrate to the new location and stay with the old psychiatrist. I chose the former, and have been very happy since with the lady who took over. She’s friendly, competent, seems to genuinely care about her patients, and I find it easier to talk to her than her predecessor.

Escitalopram is a walk in the park in comparison. It really helps with the anxiety, and also has reduced the depression by 80%. What was left fell into three categories:
– problems falling / staying asleep
– lack of energy
– lack of motivation.

The psychiatrist’s suggestion was to try a second antidepressant as a booster. Initially I was very hesitant to even consider this option, because I did not want to go through an ordeal like the venlafaxine-regimen again. She promised that if it didn’t work, I could stop any time, and so I started with bupropion – which is how we discovered that I cannot take any SNRIs. It basically felt like a toned-down variety of venlafaxine to me. After three weeks I stopped.

The second booster I tried is valdoxan (agomelatine), which comes with zero side-effects. It’s slower to show results than other antidepressants I’ve taken, but after five months and experimenting with the dosage there is a definite positive trend: fewer days with sleeping problems, gradually increasing productivity, more motivation. There’s still room for improvement, but I am feeling better than I have in over a decade.

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Two Years

Two years since my last blog post. Two years since my mother suffered a sepsis due to necrosis in the foot, caused by undiagnosed diabetes type 1. We didn’t know whether she would live or die – she lived, minus an amputated foot. I could not write about it back then and don’t know whether I want to now, as it was a very saddening and stressful experience and it took this long to come to the conclusion that I might have digested it properly enough to move on. Maybe I will go into more detail one day, maybe I won’t. For now, the above must suffice.

A lot has remained the same since then: I am still married. I am still on welfare. I still haven’t been back to therapy.
Some things changed: I am off venlafaxine now and on escitalopram. Venlafaxine didn’t do me much good and a lot of bad, and the side-effects of quitting it were horrible. Escitalopram works really well for me, though. I also have a new psychiatrist who I am more pleased with than the previous one.

So that was my life in a nutshell these past two years, as far as it is relevant to this blog. I hope to write more regularly again – I missed it, but the mental hurdles were just too difficult to take at the time.

Follow-Up With The Psychiatrist

This morning I saw the psychiatrist again. We discussed the side-effects and agreed that I would continue taking venlafaxine / effexor, as it appears to have some mildly mood-stabilizing effects on me by now, and that I’m going to stay on this dosage until my next appointment at the end of May. Since it’s been only two weeks on 75 mg so far, it might take more time to make the side-effects go away completely: my main complaint was that I felt even more tired than before, but since citalopram had that same effect, switching to another drug does not seem worth it as chances are that I react this way to all antidepressants.

The psychiatrist asked me how I felt on a scale of 1 – 10, with 10 being absolutely awesome, and I rated myself a 3, even though I had to think about it quite a bit. That rating was more influenced by my physical complaints, and by feeling exhausted and stressed out about the welfare process; otherwise I would have given myself a 4. The goal for now is to make me reach 5 – 6 on this scale, and he asked me what had to change for me to feel that way, which I answered with: “I’d need more energy to actually manage my daily responsibilities sufficiently to feel that way.”

I told him about the recent problems with the job centre and the energy provider, and he was so nice to give me the medication I need until my next appointment out of the stock at his practice, so that I would be relieved from the self-pay contribution necessary at the pharmacy. (One of the benefits of welfare is that it eliminates the self-pay contribution for medication, but right now that obviously doesn’t apply yet.)
He also gave me an incapacity certificate valid until the end of May for the job centre, and I will see him again right before this one runs out. That is important both for proving that I am actually unable to work, and so the job centre can’t put me into an apprenticeship programme – if you cannot prove you are incapacitated, they can take away your benefits if you don’t comply with their orders, or they won’t even let you get on welfare in the first place.

Depression Symptoms & Antidepressant Side-Effects Assessed

It’s becoming very clear that despite taking twice as high a dosage of venlafaxine / effexor now, the timed-release capsules work much better for me. The nausea and vertigo vanished completely, and in the mornings I don’t go through withdrawals anymore either. I do feel quite drained from the experiences of the last three weeks, though, very tired and listless. I lost 6 kg (13.2 lbs) – 4 kg over the first weekend and another 2 kg since – and even though I would welcome further weight loss very much, it goes without saying that vomiting, diarrhea and skipping meals due to nausea is not exactly a healthy way to drop the kilos and at least partially responsible for the feelings of weakness. On top of that, venlafaxine also suppresses my appetite for a good part of the day, until it returns in the evening and I suddenly start scouring the kitchen for all the stuff I did not buy when shopping…
There has been no improvements of the symptoms I primarily started taking venlafaxine for yet, the cognitive impairments and lack of energy, but I do feel more emotionally stable recently. Next Friday I have a follow-up with the psychiatrist, when I’ll find out whether I’ll increase the dosage further or stay on it for the time being.

As for the welfare process and related paperwork, the main appointment at the job centre had been cancelled on Tuesday already because the lady had become sick, and the one who works on our case at the employment agency was replaced with a colleague due to illness as well. While being very friendly as well, this colleague could do little more than collect the forms we had filled out at home and the documentation we had brought. Other than that, we will have to wait for them to get back to us. I handed in the questionnaire on my medical complaints today; the question was: “Do you have medical conditions which influence your current job or have done so in the past? Please give a short description of your illness respectively your symptoms and tell us which kinds of occupation would be influenced by these.” The space left blank was less than a quarter or a page, so I could not go into much detail:

“Diagnosis: chronic recurrent depression with comorbid panic disorder.
– permanent / daily symptoms: muscle pain in legs and arms; social anxiety; slowed-down thinking; word finding problems; problems falling asleep (at least 2 hours / night); severe lack of energy; hypersomnia; decreased libido
– frequent symptoms (at least 3 days per week): stomach pains; digestive problems (diarrhea); back pain; memory problems; concentration problems; depressive emotions (sadness, emotional emptiness, hopelessness); headaches
– periodically appearing symptoms: insomnia
– under stress also anxiety attacks
– currently (since mid-March 2013) additionally vertigo, nausea and vomiting due to starting an antidepressant regime (venlafaxine)

Because of the diverse symptoms, I am physically, intellectually and emotionally affected with any kind of occupation.”

That is as accurate an assessment as I could give of my daily problems in such a small space, and each of my healthcare providers should be able to confirm them. I learned today that the medical service will first contact my general physician for information, which is a bit of a problem since at least 80% of my depression treatment has been done by my therapist; the general physician does get reports from my psychiatrist, but except for the fact that I have participated in the medical study he does not know anything about the psychotherapeutic treatment. I do hope they’ll get in contact with him as well – if our regular case worker had been present today, I would have asked her, but her colleague was not familiar with the protocol in such cases.

The End Of An Era

Yesterday, I exmatriculated from university. Thirteen and a half years of fighting, and then it took all of 58 seconds to leave – there is a form you print out, fill in your name, address and student-ID number, give the reason for exmatriculation (I checked “illness”), and hand it over to the student secretary. She double-checked with my student-ID, stamped the form, gave me a formal statement that I had left uni, said goodbye, and that was it. My niece, who had accompanied me, timed the procedure.

That was in the afternoon, however. The morning my husband and I spent at the job centre, where we had an official appointment to start the welfare process, and saw someone from the employment agency afterwards. She might help my husband find a job, and I had to see her to work out the procedure regarding the “impaired working-ability” label. We got a total of about 50 form sheets we have to fill out: the actual application, and different questionnaires on just about every aspect of our existence, from the flat we live in (size, number of bedrooms / bathrooms / kitchens, how much rent we pay, what kind of heating it has, how much we pay for water and electricity, etc.) over our respective job résumés and occupational histories to a questionnaire on my depression history. We have to bring bank account activity statements for the last three months, and attestations of my health insurance, my husband’s integration class, the exmatriculation from university, a copy of my rental contract, yadda yadda yadda. And all of that has to be ready by Friday next week, because then we have the next appointment.
The procedure regarding my medical status will be that I formally release my general physician, therapist and psychiatrist from their obligation to secrecy, so that the job centre’s medical experts can inquire about my depression history, the treatments and my current status. They will then write a formal assessment, based on these facts, and I will get an invitation for discussing the results. If the results are clear and nobody objects, I will not have to undergo any further examinations through a medical officer.
The lady from the employment agency was very nice and sympathetic; she even inferred that she had personal experience with it – I just could not tell whether she meant depression, panic attacks or both. Regardless of what was the case, I felt treated with respect and in a non-judgemental way, which certainly is a first in my dealings with bureaucracy outside of the mental health sector. She’ll also remain our contact person for the rest of the process, so I’m doubly glad about this.

We were at the job centre for over two and a half hours, with over an hour of waiting in chairs in between. I had not taken the venlafaxine that morning, because I didn’t want to go into a side-effects frenzy during the appointment, but halfway through the withdrawal set in and my brain started buzzing like a mobile phone. I hope that for our appointment next week the timed-release capsules will prevent that scenario.

The First Day On Venlafaxine

Googling venlafaxine yesterday did not do me a whole lot of good. For a while, I was pretty scared, but then decided to judge it according to my own experiences with it. After all, the effect citalopram had on me was different from what the majority goes through as well.

Well, my first experience with it was rather horrible. The psychiatrist had told me to take the venlafaxine in the morning, with my breakfast, and so I had a banana, took the pill, and ate a sandwich afterwards. About 20 minutes later, I started feeling a little queasy and dizzy. I went to lie down on the bed, where I felt very ill very quickly. 45 minutes after taking the pill, I found myself in the bathroom, vomiting violently. I don’t want to gross anyone out by too graphic description, but it was so bad that while vomiting I thought: “This isn’t going fast enough! This stuff needs to get out NOW!!!”
Once my stomach was empty, I felt better instantly, but it was not over yet, because apparently my whole digestive tract was affected and I got diarrhea as well, while a couple more waves of nausea washed over me – those did not result in vomiting, though. In the early afternoon, the worst was over and I slept for two hours as I was completely exhausted.
After the nap, my stomach had calmed down and I only felt a bit of dizziness, but was left rather weak. I don’t dare eating anything but dry bread, plain rice and apples either, because I am afraid of getting sick again.

I just hope it will be easier tomorrow, because I don’t see myself lasting very long if I have to vomit that violently every morning. When starting citalopram, I got queasy too, but nowhere near as bad.
Originally, I’d wanted to cut the first pill (37.5 mg) in half and start with an even lower dose, but the pills are too small for that (I don’t have the extended-release capsules).

Back From The Psychiatrist

And thus begins the new treatment regimen with Venlafaxine (Effexor), starting tomorrow.

Everything went well; I was a little nervous first and not particularly in the mood for dealing with a stranger, but the psychiatrist turned out nice. He asked: “What leads you here?” I told him that I was in therapy for chronic  depression for two years and generally was really satisfied with it, but couldn’t get a handle on some symptoms like concentration problems and energy, and wanted to see what medication could do for me in that regard. He knows my therapist and has a superficial idea of the CBASP programme I’m in, and I guess that was enough credit to not let me do all the lab tests and ECG again. I also gave him permission to send reports to my general physician.
I recounted a brief history of symptoms and the treatment I received so far: First depressive episode at 12, second at 16 (this time with suicidal ideation), since the age of 19 / 20 only oscillating between different stages of major depression; panic attacks at 30, treated with citalopram, then therapy; therapy major success, but then the start of a slow decline. The psychiatrist asked about living situation, family, family history of depression, school education, what I am studying. Whether I smoke, drink, ever did drugs, take any kinds of medications.
He performed some tests on my cognitive capacities, because I had complained about them:
– “Spell the word ‘radio’ backwards.”
– “What’s the difference between a river and a lake?”
– “What’s the difference between a ladder and stairs?”
He had me memorize the words “street, traffic lights, flower” and asked whether I remembered those in between other questions, and had me do a chain of mathematical exercises: 100 – 7, then subtracting 7 from the result again, and again, and again. I scored 100% and obviously am not demented.
Some questions on differential diagnoses: do I see or hear things nobody else sees or hears, do my thoughts race, do I think I am being watched or that people talk about me behind my back, etc.?
The most difficult question actually was, “How do you feel these days?” I honestly had to think about that, and answered, “On average days, I feel subdued. Pessimistic.” I told him about the insomnia, problems falling asleep and the stomach aches, that I like to withdraw from people, worry a lot and occasionally get anxiety attacks because of the worrying.

All of that took about half an hour, then he proposed that due to my previous experiences with SSRI in the form of citalopram, I should try out what an SNRI does for me. He explained that SNRI give most people more energy, explained possible side-effects and finally gave me a prescription for venlafaxine. Unless I experience really bad side-effects, I’ll see him again in four weeks.

Edited to add: Yikes, maybe I shouldn’t have googled venlafaxine / effexor, because the results sound pretty bad… “The antidepressant everyone loathes to have taken.” Sounds like I am in for a bumpy ride…

Getting Ready For The Psychiatrist

Tomorrow is my appointment with the psychiatrist. I have a vague idea of what to expect, based on the psychological examinations at the hospital and internet research, and I’m quite used to recounting my history with depression. Hopefully, he will accept that physical reasons behind the depression have been excluded two years ago; I have documentation on the lab tests of my blood, but not on the ECG, for example – that’s still in my file at the hospital. I just don’t want to go through all of this again only to come to the same conclusion… Other than that, I’m open for any kind of neurological or psychiatric test he might want to perform.

I’ve been thinking about what I’m going to tell him. My top priorities are the lack of energy and the cognitive deficits; if we manage to do something about those two “symptom clusters” with tolerable side effects, I’ll call it a success. It might sound odd to some readers, but medicating the sadness away is not very important to me, because I feel that there is a reason when I am sad – even if I am not immediately aware of it. I just want to reach a state where I am able to deal with those reasons sufficiently.
I also hope I can skip the citalopram this time around. Here in Germany, it’s the most widely prescribed antidepressant, and usually the first antidepressant you will get prescribed. While it helped me in some regards, I feel that in my current state the side effects would outweigh the use I got out of it. Not to mention that it made me extremely sleepy in the beginning, which is certainly not what I am looking for currently.

Well, tomorrow I will know more.

Help Me, Zopiclone

I did not think it was possible, but the last night was almost worse than the one before. It started promising: Got tired and went to bed at 10.20 PM, read for half an hour and switched the lights off at 10.50 PM. Fifteen minutes later, I was asleep – until 1 AM, when I woke up and was so alert that I could not force myself back into the realm of dreams. Got out of bed for a couple of hours, then back into bed, where I read until 6 AM. Lay awake for another hour and finally dozed off just after 7 AM again.

At least I did not cry this time, but it was even more confusing than simply staying awake. So for tonight, I asked my sister for one of the zopiclone pills she got prescribed for her insomnia last autumn. A definite first, as I never took any kind of hypnotic agent before, but I just cannot go on like this. I have tried everything to rectify my sleeping cycle and it only got worse, and even though I am generally not keen on using pills, I feel like I am going to lose my mind if I don’t get back to normal hours soon.

In other news, I have an appointment with the psychiatrist in four weeks. As the psychotherapy is covered by the fundings of the clinical trial, he has pretty much free reign to do with me whatever he deems fit, because with the exception of the citalopram two years ago, the health insurance did not have to pay for anything yet.
I’m not quite sure how I feel about all of this yet. I would have prefered to see my therapist as the psychiatrist as well, because nobody else knows my mental health history as well as he does, and quite frankly it would save me the hassle of having to get to used to another “stranger”. However, I have hardly any right to complain, and maybe it will even be good for something to keep the two treatment fields separated.

A Bad Day

And I do mean bad: not-sleeping-until-5-AM-and-crying-after-waking-up-bad. I have been talking to my therapist about starting antidepressants again; even though he is also a psychiatrist, he must not treat me as such because legally therapy is “aftercare” for the clinical trial I was part of, and he is only allowed to see me as a CBASP therapist. With the kind of health insurance I have, I cannot see him as a regular patient, and I don’t have the money to cross over to his regular patient pool.
He said the antidepressants will not be able to replace the psychotherapeutic work (which I did not mean to do anyway), but might be able to aid it. He also recommended a psychiatrist to me, which makes things a lot easier as I do not have to do research and worry about whether I made a good choice or not.