When did I die and go to hell?
when did this nightmare begin? Autumn 2000. After a traumatic event in my life, I found myself booked in at Crescent Clinic, and been treated by a Psychiatrist – Doctor 1. After a brief session, he decided that I needed to be put onto 225mg of Effexor a day. He decided this, without really hearing my life story, my passions in life, my disappointments, and my major traumas. He also felt it was ok to give me this medication without telling me the serious side effects this legal drug has to offer.
After a few weeks of unbearable nausea, confusion, anxiety, agitation and numbness in my face, I contacted Doctor 1, who then suggested that the dose was to high ad I should cut down to 150mg a day. After a few days I was able to live in the world again and feel my face – wonderful.
Life continued but there were some really odd things going on in my body. Before I went onto this drug, I was one of those really lucky people who could eat what I like and never gained weight. I am 58 and my weight would always fluctuate between 48 and 53kg. I also never really had a major issue with food I would eat normal meals, but never crave food.
Now my weight had increased itself to 58Kg, and I felt I could just not get enough food. I would wake up in the middle of the night with hunger pains, and have to raid the fridge. I had become obsessed with food, Effexor had created this permanently ravenous state of being. Even after consuming a very large mans size portion of food I would still be starving.
Then there was the recurring short-term memory loss. From a person who was known to have a memory of an elephant, to remember the most minute details about events, numbers and dates, I had now developed a memory span of a goldfish. I could have a conversation with someone one minute or read a column in a magazine and the next minute have no idea what I had said or read – complete blank! I would find my self-staring into space wondering where or who I am.
The other problem I experienced was the fact that I was always on the same constant level of emotion, I was never happy or sad. I could be told or see something really sad, and no where in my body would I feel the slightest amount of compassion – I was emotionally switched off. The reverse is also true, something really wonderful could happen and once again I would feel nothing – hello is there anyone home, is the light switched on in there? I felt this was a definite problem, coming from the person I have always been, one who does get really happy about the good things, or really sad and empathetic about the sad situations in life. In fact I thought if I was going to become emotionally dead then why bother breathing anyway.
Sexual dysfunction, now here is an interesting side effect from Effexor. I had to look up what the word libido was in the dictionary, but alas by the time I had found L in the dictionary I had forgotten what I was looking for…and trust me this is where my sexual appetite began and ended on this drug.
It is now October 2001, I weigh 65kg, my family and friends cannot recognize me, my clothes have started packing themselves up and marching straight out of the house, in fear I would actually try and put my thigh or arm into them. My goldfish memory has not become a winner at work, my lack of sexual urge, has no longer become entertaining to prospective partners, and my complete emotionally dulled mind has become a nightmare to myself. Ok I am going off this stuff – I have had enough!
I read the pamphlet to the drug – no major issues on going off this stuff it appears. I quote Patients who have received Effexor for 6 weeks or more should have their dose tapered gradually over a 1-week period There is also no details given about actually having any such thing as withdrawal symptoms. In fact the package insert goes as far as to say….clinical trials did not reveal any tendency for a withdrawal syndrome… Cool that doesnt sound too bad – what is one week. I decided that since I have been on other antidepressants and have never had a problem coming off of them, I think I will actually just stop taking the pills all together.
Oh my gosh – what is this! When did I die and go to hell? I am on Day 3 of taking my last pill, and have found myself in the midst of extremely debilitating withdrawal symptoms. Physically I am dizzy, have blurred vision, brain zaps, electrical shocks in all parts of my body, extremely tired, nauseous, gastro, and night sweats. Emotionally I fluctuate between feeling either angry, violent or just so upset I cry all the time.
I decide I must see a doctor about this on Day 4. After a very unenlightening discussion with Doctor 2, who firsts asks me whether I feel I should be going off this drug she then continues that she has not ever had experience with anyone going off of it, and really has no advice to give me. She does manage to wish me luck.
Day 5. After waking up from a very disturbed sleep I realize with dismay I am still alive, the withdrawal symptoms are still very much alive and partying a storm in my body. I decide to phone Crescent Clinic -after all they deal with drug rehabilitation. I speak to a nurse who also asks me whether I feel I should be going off this drug – I tell her yes. She then says she does not know what to suggest as she does not have any experience in this area, maybe a should contact a psychiatrist. I decided that to contact another drug pusher would not be the solution, and phone Tara. Ok is this dejevu, have I become delusional, as the conversation is exactly the same. I do learn though that illegal drug abusers usually take about 7 days to withdraw from a drug.
I saunter back to bed. The days have now become extremely hazy. Luckily I have a supply of sleeping pills, which I keep taking to knock myself out and pretend that I have died and gone somewhere pain free, not this living hell on Earth. Day 10 arrives, and hey I am beginning to feel ok. The nausea has gone, I can stand, the dizziness has disappeared, and I think the symptoms have left. I am over the moon.
One month later. I have started to lose weight, but hang on what is this? I wake up one day to find my body covered in this hideous rash. It is burning and stinging and I am very emotionally upset. I see Doctor 3, who asks no questions just gives me, a cortisone injection. The rash disappears in a few hours I am feeling ok. A week later the hives are back. I go to Doctor 4 who is on call. Still no questions are asked, no answers are given to me and I am given another cortisone injection, and the rash disappears in a few hours. Next week, we are on the same procedure – Doctor 5 on call asks a few questions but also decided cortisone is the best. Great now after 3 cortisone injections in one month, I am so bloated I look like the Oros Man. If I thought I had a weight problem before, well this overblown monster in the mirror I have to face is unbearable. Yes the next week I get the rash – I refuse to have another fat injection and decide to try a homeopath instead. I am given little white pills, told to bath with chamomile and lavender drops. After 2 weeks the rash has become very minimal and bearable.
During my rash episode a had also developed incredible lower stomach pains. My first point of call was the gynecologist – Doctor 6. After doing the usual pap smears, sonar, etc, he found nothing wrong and decided to do a laparoscopy. After this interesting procedure everything was found to be healthy, but I was left with 2 scars, and aching stomach muscles. I must say though it was a wonderful feeling during the anesthetic and the day after to have no stomach pains – perhaps I should consider taking anesthetic on a daily basis.
Ok a month later, I have not been able to have a normal day. The stomach pains are so bad, I cant go out at night, I cant go out during the day, I am still suffering the cortisone side effects, and the only people I feel comfortable amongst would be the Michelin or Oros man. I have become increasingly agitated, depressed, I cry uncontrollably, and oddly enough for a placid person I have tended towards becoming violent. Suicide thoughts are on my mind completely. I would love to cut my stomach out with a spoon!
I phone Doctor 7 the gastroenterologist who books me into hospital for my severe stomach pains. He runs a few blood tests – everything appears to be normal, does a sonar – normal, and then decides to do a gastroscopy and colonoscopy. Great news everything is completely normal and healthy! He then proceeds to tell me that he feels everything is all in my mind, and calls in one of those drug pushers (psychiatrist) Doctor 8. After a futile discussion with Doctor 8, I decide I cant live in such pain; maybe all these medical practitioners are right after all and this must really be all in my head. I am back on Effexor.
Within a month, my rashes gave completely gone and my stomach pains to. Ok yes this must have been all in my head. It is strange though that it was never in my head before I had begun my Effexor journey into the unknown.
I decide one day to do a search of Effexor on the Internet. Whats this – loads of sites dedicated to the subject Flexor and associated withdrawal symptoms! My eyes grow wider as I read the countless accounts given by victims, who suffered the same debilitating effects I went through, the same lack of information from both their medical practitioners and from the information provided by the manufacturer of the drug Wyeth. Then I get a chill down my spine – countless people describe the horrendous rashes and abdominal pains they had on withdrawal of the drug! Now I am angry, I am very angry – this was not all in my mind – these pains were real, and a serious consequence from this evil drug. I have been put back on the drug, due to the misinformation of doctors 3 through to 8! I have suffered months of pain due to their apathy and the lack of information provided by the manufacturer of Effexor – Wyeth in their insert pamphlet.
Even more interesting was my fellow sufferers entries concerning, the emotional state they suffered after discontinuance of this drug. Most also reported feeling very angry, violent and suicidal. Sadly there had been some entries from relatives or friends noting that the sufferer had committed suicide during withdrawal from Effexor. I now realized why I was so incredibly depressed, angry and at times violent towards myself. But this makes complete sense. If an e user or any other illegal substance user comes down after going on their high, they get extremely depressed. These illegal drugs work on the same chemicals in your brain, as the antidepressants – serotonin and dopamine. It makes complete sense that after my brain had been fed these chemicals for so long, it would not know how to naturally function again, and yes spiral into a downward nightmare.
I feel that it is ironic that there is so much public information on the side effects of illegal drugs, so many support groups for illegal drug abusers, so may clinics for these abusers where they can be treated with empathy in safety – but none for the Abused legal drug users. This information has been locked way in a shrine of secrecy, doctors have not been bothered to update themselves on the lethal effects of these drugs, drug rehab clinics have not been informed on how to deal with these patients -are we destined to suffer this nightmare in silence, a world of non communication!
Then comes the next interesting fact, with continued use of the drug, patients are increasingly at risk of developing a potentially lethal toxic condition known as Serotonin Syndrome. It is characterized by changes in mental status, agitation, tremor and shivering. Effexor has also been documented to cause cardiovascular problems in some susceptible people after long-term use. Although Effexor initially increases concentration and energy, patients have reported long-term effects of impaired memory, impaired concentration and mental disability. I get alarmed over these facts and decide to contact the Psychiatrist Doctor 8. This was 5 months ago, and I still am waiting a response. Once again I have gained more weight, and have decided that the serious side effects do not outweigh the benefits of staying on this drug only due to addiction at this stage. I am going off this drug once more, this time with the information at hand, I am doing it incredibly slowly.
After many counts of unsuccessful withdrawal trials discussed on web boards, it seemed that the best way to wean myself off this drug is over a very long period. Withdrawal onset is rapid, only after missing one days dosage do you experience them, so doctors had found the only drug able to help with these effect was the drug Ondansetron, which is the drug used to treat chemotherapy patients for their side effects. I went to Doctor 9 to discuss my withdrawal programme. Once again he could not shed much light on the subject so I enlightened him on what prescription I needed. I handed the prescription to the pharmacist who then informed me that 2 weeks supply of Ondansetron would cost R2 000! What – is this stuff made from platinum or gold? I opted for a 1 weeks supply.
I start on my slow tapering off period – this is certainly not the Patients who have received Effexor for 6 weeks or more should have their dose tapered gradually over a 1-week period as quoted by the manufacturer. I try out my gold plated Ondansetron for my first daily withdrawal – yes I do not have the electric shocks, dizziness, confusion as before, but I still could not turn my head without inducing a paralyzing nausea.
During my enlightening web search I come across a petition from individuals who have been on Effexor to Wyeth to let them know they serous side effects of the drug and the fact that thousands of patients in the US and worldwide are unable to discontinue Effexor or even reduce dosage due to the rapid onset of severe withdrawal-like symptoms. I decide to contact the manufacturer Wyeth. After been unable to successfully get hold of the doctor or pharmacist there, I insist on speaking to the MD of the company. I ask her to please read the petition found at www.petitiononline.com/effexor/ and to supply me with her comments. She agrees to this and tells me she will get the pharmacist and doctor to contact me the next day. She did say that patients have been able to wean themselves off the drug after 6 months!! What?
Day 2 on contact with Wyeth. I speak to the pharmacist, who informs me that she would have to get their associates in America to answer my concerns. The doctor on call contacts me to basically inform me that she could not answer my questions directly to me, but would talk to my GP who could then pass on the information to me. In terms of commenting on the web site, I was told that she was not at liberty to comment on this.
The MD has not provided any feedback either. I find this broken telephone way of communication extremely frustrating. To not get to angry about this, I try and see things in the lighter side of life and realize with intense humour how strange it is that in the year 2002, the medical profession still insists on conducting business in the traditional ways, which were developed in the dark ages.
Day3 on contact with Wyeth. I receive an email from the company pharmacist, telling me that the information would be passed on to my doctor, and she sends me the package insert? Ok hello I receive one of these in every box I buy. Anyway I decide to do a bit more research on the web, turns out that the comments on discontinuance of this drug in the package insert, do not comply with the one that was approved by the US Food and Drug Administration in March 2000 – at least in the US it has been acknowledged that there is the existence of Venlafaxine (Flexor) withdrawal syndrome.
I find it incredibly disturbing that this has not been implemented in South Africa. I ask the pharmacist if she could please explain why this is the case. I await her response. I still await any response from the company on their comments on the website.
This issue is no longer a personal journey for me it has now become a public responsibility. I feel that all my pain and suffering I have been through and the pain which still awaits for the next 6 months will be all worth it, if I can reach just a few individuals who have been on the is drug, and wondering if the pains they feel are real or not, as well as all prospective patients who will be prescribed this drug. I know that if I had been given this information to make an informed choice in 2000, I would definitely have chosen not to go on it. I hope that these words have given future consumers the ability to make an informed choice.
So what have I learnt?
Yes Psychiatrists did go to medical school, they do have a medical background, but have they walked a mile in your shoes? Have they lived a day an hour or a minute in your body? The only person who has is you, and they cannot know your state of mind or your body better than you do.
Ethically doctors should be keeping up to date with the latest medical research – realistically I have not found this to be the case. With all the information available to us as patients on the Internet and in books, we now have the responsibility to ourselves to educate ourselves. Luckily we are no longer living in medieval times, were we would be at the mercy of our doctors.
Anti depressants are supposed to be used as a basis for trying to fix a chemical imbalance in your body. If you have just gone through a traumatic event in your life, or feeling depressed due to circumstances – there is no reason you should be going onto these potentially harmful drug. There are many alternative therapies available. Taking them would be like taking morphine for pain, it cures the pain not the problem. Taking these drugs could prove to turn out to be a very expensive life long journey.
Educate your doctor, so that the next time a patient walks in with a similar problem to yours, they would be able to get an educated, up to date answer.
This is Survivor Story number 5.
Total number of stories in current database is 48
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