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.

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.

Venlafaxine: Doubling The Dosage

It was time to go from 37.5 mg to 70 mg of venlafaxine per day, and also to switch from the regular tablets to timed-release capsules. Today is a public holiday in Germany, and with the long Easter weekend ahead, I would have a few days in a row for adjusting to the new dosage. I was prepared for the worst – more nausea, maybe even vomiting, but in the end it turned out relatively harmless. There was a bit of vertigo and some tingling in my limbs, but generally the transition was rather smooth. I can definitely tell a difference between timed and regular release, because as a capsule, the side-effects do not (sometimes violently) spike within the first 120 minutes after consumption, but create a gentler wave rather that carries you into the afternoon.

Arranging Appointments Around An Antidepressant

The good news of the day: after my therapist’s statement arrived in the mail, I was able to start the application process for welfare today and it got dated back to March 1st, meaning that once the application gets approved, I’ll get the full sum for this month already.
The bad news of the day: it’s a damn complicated process. As a university student, I am not covered by welfare – except when the student is not able to work at least 18 hours per week, which I’m currently not. But to earn the “impaired ability to work” label, I first have to meet the job agency’s doctor; until then, I count as a non-impaired person seeking state support – and as such, I cannot apply for the kind of welfare I would qualify for, because I am a student. Are you still following me? So the idea the people at the job centre came up with was that my husband needs to start the process, and put my name on the list of other people in the household who’d belong to the “community in need” (a rough approximation of the German construct “Bedarfsgemeinschaft”) instead of the other way around, and once I saw their doctor, we would switch the application over to me as the main applicant… We have another appointment on Thursday morning, which will hopefully bring more clarity about the proceedings.

Which brings me to the next problem: the new appointment is at 9 AM. Right now, I’m toying with the idea of taking the venlafaxine afterwards, because the withdrawals in the morning are generally less severe than the side-effects after taking the pill. That also means that I am going to stay on the current dose until then, because I am sure increasing it will also increase the side-effects again for a while.
Generally I am doing better; the nausea / sickness is finally gone and my appetite usually returns around 4 PM, which allows me to have a normal dinner. The only persistent symptom I currently have is vertigo or dizziness, so that I still have to lie down again after breakfast, but it feels very normal, no paraesthesias or “funny feelings”.
I am not sure if I have any positive effects from the venlafaxine yet. My husband claims I handled our financial crisis last week much better than he expected and credits the antidepressant for it. It might very well be the case; I have not had any severe anxiety recently, but on the other hand I have been so consumed with just managing every single day that there was literally no time for me to worry about anything else.

More Financial Woes

The last two days, we had a financial crisis to weather: I had exceeded the credit limit of my bank account and was two months behind with the payments of the electricity & gas bill, and had two letters in the mail which threatened me with termination of the bank account and gas supply respectively if I didn’t pay off the debts immediately. The bank account wasn’t a major obstacle since a smaller sum only was required to bump it back into the credit range, but the electricity & gas bill posed a huge problem – no matter how we juggled the figures, we did not have enough money to pay it off. I tried to arrange a payment in rates, but while the idea got green-lighted by the company representative I spoke to on the phone, the finances department never called me back to discuss the details. So in the end I had to ask a friend to help us out – which she graciously did, and actually had offered to do first.
I don’t like mixing friendships and finances, but when forced to choose between having the heating turned off and asking for help, I will swallow my scruples and pride. As bad as it is that I have to ask for help and as much as I have cursed my situation and the depression which led me into it, one positive aspect of it is that I can be certain that my friends are not fair-weather-friends only, but genuinely care.
It also reminded me of something my therapist once told me – that one cannot be successful in this world without a support net of other people, and that you cannot recover without asking others for help.

The good news are that my therapist’s statement is in the mail and should arrive within the next two days, which means that on Monday I can officially start the application process for welfare. So hopefully the financial problems will be alleviated a little soon.

One huge problem on top of the monetary hassle was that I had to manage the organisation of all the “negotiations” while suffering through the venlafaxine side-effects: yesterday I made my phone calls in the morning, before taking the antidepressant, with the result that I was well past my usual breakfast time when finally being done with them, and already had withdrawal symptoms. Today I had to wait for a company representative to come over, which was scheduled for 11 AM. So I was up and dressed the entire time when during the past week I would tide over the most intense side-effects in bed, meaning that I completely spaced out on the sofa because of the brain zaps. I was so dizzy that I could hardly see straight. Eventually my husband persuaded me to take a nap, which was just as well, because the guy showed up at 2.30 PM only.

Generally I am doing better, though: my appetite is getting up and while meat still is a no-go, I actually had a proper dinner tonight (spaghetti with tomato sauce), the first in a week!

Day 4: Trippin’ On Venlafaxine

That’s the only way I can describe it. The nausea has shrunk to a 15-minute-period which sets in about an hour after taking the venlafaxine, but in the afternoon I experienced paraesthesias wandering from my brain over the back into arms and legs – a tingling sensation, not unlike the feeling when the hair stands up on your arms. It was, and here I start sounding as if being high, as if I was floating in water, or as if my body was filled with water and jellyfish were drifting through it, pulsating. My brain was the biggest jellyfish of them all, from where all activity radiated over my body.
I did not hallucinate – at all times I knew who I am, where I was and why I felt that strange. But when you go see a 3D-movie, you know that what you see is not real, yet the illusion still works, and that was how it felt for me.

The Third Day On Venlafaxine

I lost 4 kg (8.8 pounds) since Friday. Even though it is getting easier on my digestive system and the nausea usually starts dissolving 90 minutes after taking the venlafaxine, I still can eat only selective groups of food, and only in small portions –  apples, bananas, pineapples, potatoes, rice, bread. Oh, and my soy drink works too. But meat, fish, eggs or vegetables make me instantly sick. While I actually welcome the weight loss, I hope that does not lead to a rebound further down the road…
The brain zaps are increasing, and sometimes it feels like thousands of ants are crawling over the surface of my brain.

The Second Day On Venlafaxine

… was better. I took the tablet directly after breakfast instead of during it, and that helped: the nausea was tolerable and I did not have to puke. Still cannot eat much, though. More vertigo than yesterday and a slight headache. When moving my eyes quickly, my brain starts “shivering” – those are not full-blown brain zaps, but it rather feels like my brain turned into jello and quivers with every eye movement.
Even though I didn’t do much today, I feel exhausted.