6.01.2009

Living Nightmare

I rarely place blame on things other than "self" that cause me suffering. I have been known to make a few poor decisions and the consequences of those choices are almost always acknowledged to be my own doing. I am not afraid to accept responsibility for fucking up - I do it often.

That being said, I currently feel like a victim of our medical community - specifically mental health care providers.

Here's a bit of a personal history:
I spent the first 5 or 6 years of my life in and out of hospitals because I suffered from debilitating vertigo spells from the time I was 18 months old. No one seemed to know exactly what caused these "dizzy spells" and there were many unsuccessful treatments that not only included medication, but strange advice such as "give her dark chocolate when she has an attack" or "give her a spoonful of honey or sugar." I was a frequent patient at Children's Hospital and most likely glow-in-the-dark from the amount of radiation I was exposed to.

Since physical activity seemed to exacerbate my condition, I was often found sitting against the wall in gym class - and was medically excused from physical education in high school. I seemed to gain a bit of a reprieve from the vertigo spells from age 9 to 11, but on my twelfth birthday they came back. Things had changed slightly. What used to be rotary vertigo - where you could actually watch my eyes watch the room spin round - became an internal feeling of spinning. No one could see any difference in my appearance when I got an attack. I became so frightened that I would never be able to live a normal life; never be able to drive a car; never live without the fear of an impending attack. I never had a warning, the attacks always just happened like someone turned on a switch.

From 12 to 15, not only did the vertigo continue to plague me on a weekly basis, I started to develop other symptoms as well. The rounds of doctors and hospitals started again. I missed more school during high school than I actually went. After a trip to the University Hospital in Madison, a neurologist there pinpointed a nerve that was pinched in my brain stem. It was inoperable and untreatable. The only relief he offered was a medication called Meclizine that was developed to treat dizziness from motion sickness. It never touched the severe vertigo I experienced.

Sometime during the tests and multiple doctor visits where nothing was proving conclusive, one doctor suggested I see a psychiatrist to have a psychological evaluation. I was offended (but unable to voice that as a 14-year-old terrified little girl) that the doctor didn't believe there was something physically wrong with me and that I was possibly making this all up. My mom took me to a shrink, and this is where my victimization begins.

I was 14 - possibly 15 - and couldn't physically walk up the street without passing out. I had spent my life being looked at by the other kids like I was some sort of freak for not being able to do the same things as they did. I had been through more medical tests than most lab rats with inconclusive results, not to mention I had just hit puberty. If anything, I needed someone to talk to. But what happened was that this psychiatrist threw me on Paxil, a drug that is not approved by the FDA to treat children. When that caused a manic reaction, I was switched to Zoloft. That had the same effect, so they decided to put me on a mood stabilizer. Very long story short, that began a carnival ride of antidepressants/anti psychotics/anti anxiety pills that included 2 extended stays in a psych ward for "med adjustments" and ceased when I was 19 and demanded to be taken off everything once the doctor suggested I had Obsessive Compulsive Disorder and not any of the 10 other diagnoses he had gone through. As I shouted at him for medicating me to the point where I didn't know where I was, he admitted that he "never knew what was wrong with" me in the first place. Awesome.

For the next 8 years I went through life sans medication and genuinely happy for the first time in my life. I had been to see a chiropractor who helped sort out the vertigo and not only stopped taking all medications, but stopped polluting my body with any sort of substances that could cause a change in perception. Things seemed alright until 2006 when I started having panic attacks. Now, I fully admit to making life choices that caused undue stress - and then dealing with the stressors by clenching my jaw and refusing to act out in any way that was inappropriate. I didn't exactly deal with things at all.

By the time I finally was able to get to a doctor, the panic disorder was so severe it cost me my job and my life as I knew it. I wanted an option other than medication to get me out of my mess, but the therapist I was seeing said that I was already using all the coping mechanisms she could teach me to deal with anxiety. I bit the bullet and took the Celexa. Of course I had an adverse reaction that nearly landed me in the hospital, and was forced to try Effexor XR. The doctor told me it was a very potent SNRI and that I should never miss a dose because the half life was a mere 5 hours. I wanted so badly to not have to take it, but knew I would not get better on my own. He told me that after a year without symptoms, I could go off it.

Thankfully the Effexor XR brought me back to full health, and when I last saw my doctor we agreed that I could start tapering. I started tapering off 6 months ago.
10 days ago was the last dose I took.
This week has been almost as hellish as when I was "sick" and I have questioned my sanity by the minute. Every time I look into Effexor withdrawal further, I scare myself silly. I have yet to read an account of someone who successfully got off the drug in a timely manner. All I find are horror stories and people who are forced to count out granules to take daily because they can't handle going from 37.5mg to nothing.
I found a Harvard study that concluded 80% of patients experience withdrawal syndrome, which makes it the only drug worse than Paxil in this regard. Another site listed all of the known withdrawal syndrome symptoms and a brief description of each. I'm going to copy and paste the one's I have been experiencing this week:

Cardiovascular:
Chest Pains - Severe discomfort in the chest caused by not enough oxygen going to the heart because of narrowing of the blood vessels or spasms.
Palpitation - Unusual and not normal heartbeat, that is sometimes irregular, but rapid and forceful thumping or fluttering. It can be brought on by shock, excitement, exertion, or medical stimulants. A person is normally unaware of his/her heartbeat.
Bradycardia - The heart rate is slowed from 72 beats per minute, which is normal, to below 60 beats per minute in an adult.
Tachycardia - The heart rate is sped up to above 100 beats per minute in an adult. Normal adult heart rate is 72 beats per minute.

Gastrointestinal:
Gagging - Involuntary choking and/or involuntary throwing up.
*Nausea - Stomach irritation with a queasy sensation similar to motion sickness and a feeling that one is going to vomit.
Swallowing, Difficulty - A feeling that food is stuck in the throat or upper chest area and won’t go down, making it difficult to swallow.
Vomiting - Involuntarily throwing up the contents of the stomach and usually getting a nauseated, sick feeling just prior to doing so.

General:
Chills - Appearing pale while cold and shivering; sometimes with a fever.
Fatigue - Loss of normal strength so as to not be able to do the usual physical and mental activities.
Hot Flashes - Brief, abnormal enlargement of the blood vessels that causes a sudden heat sensation over the entire body. Women in menopause will sometimes experience this.
Influenza-like Symptoms - Demonstrating irritation of the respiratory tract (organs of breathing) such as a cold, sudden fever, aches and pains, as well as feeling weak and seeking bed rest, which is similar to having the flu.
*Malaise - The somewhat unclear feeling of discomfort you get when you start to feel sick.
Syncope - A short period of light-headedness or unconsciousness (black-out) also know as fainting caused by lack of oxygen to the brain because of an interruption in blood flowing to the brain.

Nervous System:
Coordination, Abnormal - A lack of normal, harmonious interaction of the parts of the body when it is in motion.
*Dizziness - Losing one’s balance while feeling unsteady and lightheaded which may lead to fainting.
*Disequilibrium - Lack of mental and emotional balance.
Faintness - A temporary condition where one is likely to go unconscious and fall.
*Headache - A sharp or dull persistent pain in the head
*Light-headed Feeling – Uncontrolled and usually brief loss of consciousness caused by lack of oxygen to the brain.
Migraine - Reoccurring severe head pain usually with nausea, vomiting, dizziness, flashes or spots before the eyes, and ringing in the ears
Muscle Contractions, Involuntary - Spontaneous and uncontrollable tightening reaction of the muscles caused by electrical impulses from the nervous system.
Paresthesia - Burning, prickly, itchy, or tingling skin with no obvious or understood physical cause.
Restless Legs - A need to move the legs without any apparent reason. Sometimes there is pain, twitching, jerking, cramping, burning, or a creepy-crawly sensation associated with the movements. It worsens when a person is inactive and can interrupt one’s sleep so one feels the need to move to gain some relief.
Shaking - Uncontrolled quivering and trembling as if one is cold and chilled.
Sluggishness - Lack of alertness and energy, as well as being slow to respond or perform in life.
Tremor - A nervous and involuntary vibrating or quivering of the body.
*Vertigo - A sensation of dizziness with disorientation and confusion.

Psychiatric:
Aggravated Nervousness - A progressively worsening, irritated and troubled state of mind.
Anxiety Attack - Sudden and intense feelings of fear, terror, and dread physically creating shortness of breath, sweating, trembling and heart palpitations.
Auditory Hallucination - Hearing things without the voices or noises being present.
Bruxism - Grinding and clenching of teeth while sleeping.
Carbohydrate Craving - A drive and craving to eat foods rich in sugar and starches (sweets, snacks and junk foods) that intensifies as the diet becomes more and more unbalanced due to the unbalancing of the proper nutritional requirements of the body.
Concentration Impaired - Unable to easily focus your attention for long periods of time.
*Confusion - Not able to think clearly and understand in order to make a logical decision.
*Crying, Abnormal - Unusual and not normal fits of weeping for short or long periods of time for no apparent reason.
Depersonalization - A condition where one has lost a normal sense of personal identity.
Depression - A hopeless feeling of failure, loss and sadness that can deteriorate into thoughts of death.
Dreaming, Abnormal - Dreaming that leaves a very clear, detailed picture and impression when awake that can last for a long period of time and sometimes be unpleasant.
*Emotional Lability - Suddenly breaking out in laughter or crying or doing both without being able to control the outburst of emotion. These episodes are unstable as they are caused by things that normally would not have this effect on an individual.
*Feeling Unreal - The awareness that one has an undesirable emotion like fear but can’t seem to shake off the irrational feeling. For example, feeling like one is going crazy but rationally knowing that it is not true. The quality of this side effect resembles being in a bad dream and not being able to wake up.
Forgetfulness - Unable to remember what one ordinarily would remember.
Irritability - Abnormally annoyed in response to a stimulus.
Jitteriness - Nervous fidgeting without an apparent cause.
Lethargy - Mental and physical sluggishness and apathy that can deteriorate into an unconscious state resembling deep sleep. A numbed state of mind.
Restlessness, Aggravated - A constantly worsening troubled state of mind characterized by the person being increasingly nervous, unable to relax, and easily angered.
*Tremulousness, Nervous - Very jumpy, shaky, and uneasy while feeling fearful and timid. The condition is characterized by thoughts of dreading the future, involuntary quivering, trembling, and feeling distressed and suddenly upset.
Yawning - involuntary opening of the mouth with deep inhalation of air.

Respiratory:
Breath Shortness - Unnatural breathing using a lot off effort resulting in not enough air taken in by the body.

Skeletal:
Neck/Shoulder Pain - Hurtful sensations of the nerve endings caused by damage to the tissues in the neck and shoulder signaling danger of disease.

Sensory:
Taste alteration - Abnormal flavor detection in food.
*Tinnitus - A buzzing, ringing, or whistling sound in one or both ears occurring from the internal use of certain drugs.
Visual Disturbance - Eyesight is interfered with or interrupted. Some disturbances are light sensitivity and the inability to easily distinguish colors.


I starred the symptoms that have been the most obstructive and disturbing. Luckily my list is only 1/3 of the entire list of withdrawal syndrome symptoms so I could have it worse (although I'm pretty sure I would have gone right back on the medication had it been even the slightest bit worse). Even as I sit here writing this, I've had crazy crying bouts. The dizziness is so bad I can barely turn my head. I went to use the bathroom and ended up vomiting again. This is day 10! I broke down in tears earlier and told my mother that I am seriously thinking about just taking the stupid medication again because I'm afraid I will never feel normal again. I have read medical journals that documented withdrawal to last 2 months and sometimes over a year! It should not be legal to manufacture something that causes so much pain to discontinue. Drug companies get away with it because there is no evidence of "dependence" like with benzodiazepines. The quick-fix-prescription sentiment of most health care providers in this country possibly puts more people in a position of antidepressant dependence than need be.

I can't know for sure whether I would have ever developed panic disorder on my own over the years, or if the fact that my brain was "fried" at a young age by dozens of medications that weren't approved to treat me weakened me in some way to become easily susceptible to such disorders. I know now that I can avoid having to take medication in the future by adhering to a strict daily routine to manage anxiety and by continually making positive choices in regards to my health. I hope to walk through this and somehow help someone else avoid the hell I've been though. Right now I'm just going to focus on today and getting through another 24 hours without that brain poison.

Feel free to share any experience, strength or hope you have on the subjects of medication, mental health or even other medical issues you struggle with. It's taken a huge leap of faith for me to publicly acknowledge what I've experienced in my life, so please be respectful of that.

6 comments:

Shane said...

Huge props to you for being able to share your story. I agree, I think drugs meant to help us are just hurting us. Wish I could give some words of encouragement, but I don't think there's much to say. I guess I'll just give you a hug next time I see you :)

jterry11007 said...

Vega,

Thank you for sharing your living nightmare with so much courage, strength and hope. You are an inspiration. Wishing you plenty belly laughs and a swim in the twinkly sea.

Love and light
James

Ardathbey said...

I must have taken and extraordinary amount of courage to speak about all that. I admire you more than I already did. I am sorry for the the nightmare the system put you through. I worry that you are not just one case that went awry, but that many other's have suffered the same.

I myself deal and have dealt with anxiety and panic issues my entire life. It took me 6 years to graduate high school because I was so frequently absent due to fear. I too have been and am currently on Paxil. It seems to be the only drug that helps. I've done Efexior and Wellbutrin as well but they were worthless.

And coicidentally enough I am currently out of town without my meds and expect some withdrawals to begin.

Again, kudos for opening up. We all care about you and you don't have to go it alone. Don't hesitate to reach out if you need ANYTHING.

Trina said...

Oh Vega, I'm so sorry. You're so amazing, I had no idea what you've dealt with, thank you for trusting us with this. I love you. I'm sending you lots of daily hugs from Portland.

Mon said...

Hi
I was also on Paxil (or Aropax as its known in Australasia) a few years ago for several months I also suffered moderate to severe withdrawal symptoms when trying to stop taking them.

After 3 months of trying to reduce the dosage without bringing on the symptoms I got so frustrated with the process that I decided to stop cold turkey and just deal with the withdrawal symptoms until they finished.

There was approx 3 to 4 weeks of full on withdrwal effects most days, with a large number of days where I could not go to work.
After that there was another 3 to 4 weeks of intermittent symptoms then they faded off completely.

It was tough but it was WORTH IT. It was weird having an 'addiction' knowing that at any stage if i just took one little pill i would feel Normal again for 12 hours. But i was never truly tempted as I just wanted that CRAP stuff out of my system for good

On a second topic, for panic attacks/anxiety, try propanolol. It works on the physical symptoms of anxiety/panic by reducing the adrenal production. Which means you dont get the racing heart, shaking, palpitations. So therefore has no impact on your ability to function normally, like sedatives do, and dont have the side effects antidepressants can have.


I wish you all the best for whatever decisions you make. When I read your story all I could think of was how much courage you have. Good luck

Mon

NerdOneirik said...

Hello, you may or may not remember me. I be Troy's friend Heather. Anywho, in August of 2008 I was diagnosed with Bipolar disorder, Severe Panic Disorder and ADHD. I had started seeing a Psychotherapist and a Therapist due to crippling anxiety/panic attacks and having what I now know to be a manic episode. They didn't know that I was bipolar at first so they gave me Lexapro, an SSRI. First rule of bipolar disorder - NEVER TAKE AN SSRI. It sent me into a state of mania and that's how we found out that I be Bipolar.

Accepting this was probably one of the hardest things I've ever had to to. Accepting the fact that I had to start taking medication was the HARDEST. My mother has been addicted to pills since before I was born. I was terrified of them and still am. But after months of not being able to control my own brain, and finally, stepping in front of a moving car, I reluctantly tried them. After Lexapro came Abilify. Abilify fucked up my brain so bad that I can't even remember that time period. I was only on it for 2 weeks. Then came what I am currently on - Lamictal - an anti-convulsant. It gave me my brain back.

Everyday I toy with the idea of going off of my medication so that one day I can be medication-free. BUT I know that it is likely I will have to take this medication for a majority of my life. And that fucking sucks. I hate relying on a pill to be "normal" aka functional. I started a blog about it and it deals with my whole experience.

I was anti medication for a very, very long time. I still don't like the fact that I'm dependent on it. But then I remember what if felt like to have my own brain attack me. I remember my mania and that moment where I know I had lost complete control of my mind. I never, ever want to experience that ever again. One day I will go off the meds but I know that for right now, it's ok that I'm on them. And that's incredibly hard to say. SOMETIMES medication can work. I'm incredibly lucky that it did for me. Thought, cognitive behavior therapy also helped me gain control of me head again.

Ha... this is as long as your post... lol Read me blog if you want, it describes everything. I'm sorry you're going through this because I know what it's like not to be able to control your own brain. It fucking sucks.