This is going to be a bit long, but my intention is to provide some hope for those who are recent sufferers and more longtime sufferers. If you want to skip ahead to other sections, please refer to the table of contents.
TABLE OF CONTENTS:
Words of Hope
Summary of Events (Acute Phase)
Early Coping Strategies
Early Healing Plan
Advice on Fastest Way to Heal
Commitment to Health
WORDS OF HOPE
DP/DR is recoverable. I have done it, others have done it, you can do it too. No one escapes life without painful challenges. For some it’s cancer, for others it’s severe injury…for you and I - it is/was DP/DR. Be grateful that you do not have anything terminal and that there are things that you can do to begin the process of healing. You are not psychotic and will not become psychotic. This scared me for some time, I was sure I was done for. Someone who is psychotic is not aware of their own psychosis. Your awareness of your condition is itself a recognition that your sanity is quite intact! Your process of healing is a process! Much like a watched pot never boils, so too a constant awareness of your symptoms will inhibit the speed of your recovery. Your symptoms are not you! What you are experiencing is the mind/body in shock - when you begin to heal, you realize that nothing you thought about yourself during this time was true (I am depersonalized, I don’t exist, etc. etc.). It’s not true, it only feels true, but those feelings can and will go away! You never lost touch with reality. Yes, it feels that way, everything feels fucked up, but you never stepped outside reality. You are still there, suffering very uncomfortable perceptual changes that are resulting from a shocked system. Heal the system and the perceptions return to normal - don’t look for reality to ‘snap back.’ Your senses and perceptions will feel normal/real when you begin to do healthy things for your mind and body. Start making very small steps towards ‘normalcy’. Go out to movies with friends (I remember seeing inception following my episode and being freaked out, anxious, dissociative, and emotionless - I went anyway….and it wasn’t easy). Do other things that you would normally do; the pain and discomfort will persist in spite of your actions in the beginning, but it is setting the stage for your recovery. Start implementing lifestyle adjustments (see Advice on Fastest Way to Heal) that will move you towards health and away from suffering. You need to help give your body and mind the conditions that are conducive to health and healing. Stay the course - continue to do ‘normal’ things and reengage in your life, while becoming healthier and healthier using some of the methods I discuss below. Very slowly, but steadily you will start forgetting the symptoms and pains as they go away. Join me in making 2014 about health and recovery. I will commit to lifestyle changes in my own life and we can walk the path together.
SYMPTOMS (Immediately after use and during acute phase ~ 6 months - 1 year):
Diagnosis (self) - DP/DR, extreme anxiety, PTSD
Diagnosis (psychiatrist) - extreme anxiety (refused to validate dp/dr as a separate disorder)
Cause - Discontinuation Syndrome (coming off anxiety meds too quickly)
I won't go into too much detail about the ups and down of my most acute tales of suffering, but I will break down my symptoms for you so you can relate this story to your own. Reading symptoms on the web used to scare me shitless, because I thought I would never be normal. Don't fret, because all of these symptoms have been 100% cured =), so stay put.
- Visual distortions, ghosting/trailing, floaters, 'blurred vision'
- pane of glass phenomenon in vision (like I was separated from everything)
- sensation of loss of self, could not find it, normal self-sense was not there, existential paranoia
- Extreeeeeeeeme anxiety, paranoia, fear of going insane or losing mind
- Frame by frame sensation, as if the world were existing in cut-frames and not fluid
- Forgetting names, normal things, difficulty conceptualizing/abstract or critical thinking
- This was so frightening, I thought I would never be smart or normal again
- Tendency to stare at things, knowing I should know what it was, but unable to 'feel' it normally, or think of what it was called
- This happened with people, places, and things (even people I loved, this was very hard)
- Extreme sense of sensory detachment from world, self, feelings
- ZERO short term memory (literally forgetting things seconds after they occurred)
- No sense of time continuity
- Constantly becoming aware of symptoms and reacting to them with anxiety/paranoia
- Constantly fearing I would never be the same again
- Hating God/Life for making me suffer so extremely
- Difficulty with coordination and speech
- Weight loss - I weigh 160 lbs normally, I was down to 120 during the worst...
- No positive emotions, only anxiety, fear and paranoia
- Fluorescent Lights felt terrible!
- Couldn’t drive a car (for some time) because my perception was $%^&*’ed
- Probably a thousand more….
I was like this for 1.5 years with EXTREME symptoms. I used to read people's posts on dpselfhelp and freak out because mine sounded way worse. My attempt is not to diminish others, but to help you realize that my symptoms seemed more severe than most by description and as of now I typing this from a place of peace, happiness, and increasing wisdom. Additionally, the period of severe diffulty in my life has given me tremendous sympathy for other people facing difficulties in their life and I have a new understanding for the importance of compassion and non-judgement towards people suffering and in pain.
SUMMARY OF EVENTS (ACUTE PHASE):
Extreme psychological fallout. I could not pull myself from rock bottom. Every day was the most excruciating physical and mental pain I could have never imagined. I did not know it was possible to feel that bad. Difficult time staying functional in my job working for a big company in New York City. Decided after a week or two to see a psychiatrist. The psychiatrist started treating me with a variety of different medications (paxil, zoloft). None of them worked and only made my symptoms worse and I refused to stay on them. I felt that this psychiatrist did not have enough experience with these symptoms so I decided to see someone who had seen these symptoms before. The new psychiatrist decided to put me on Bupropion and Xanax to start. Xanax took some edge off, but was nowhere close to being sufficient enough for any sort of normal existence. Bupropion helped me sleep a bit better and brought back some appetite, which was good because I was losing so much weight. I didn't want to take these medications, but my doctor and family said that I had to ride it out to get them to therapeutic levels before making any decisions. He also began to taper me onto Effexor XR. My symptoms got worse at first with Effexor, however, they went back to normal levels after being on it for a few weeks (that was a very difficult time). The cocktail of Effexor/Xanax was not a CURE, and I knew that it would never be, but it was something that I hope would bridge me out of the most difficult phases and give me some breathing room where I could start to implement other healing modalities.
I finally convinced my family that I needed to come home because my symptoms were so severe I could not hope to recover in my current environment. I went on short term (paid) leave (provided by my place of work) and when that was exhausted, I went on long term disability for some time (unpaid). I spent that time with my parents, which helped to instill some hope for me, knowing that home was the best place for me to heal.
EARLY COPING STRATEGIES:
During the early stages, there was very little (read: nothing) I felt I could do to feel better. Additionally there was tremendous amounts of fear triggered by uncomfortable thoughts and perceptions. My self-awareness of my anxieties and symptoms was so high that it was a feedback loop of symptom recognition, and anxiety/freakout. I read on the web that distraction was an important part of healing from these symptoms, so I decided to lose myself in something. I chose video games (Starcraft II) because they were very absorbing for me. The pain was intense, but I could play for hours and it helped me feel more normal. I also ate so much ice-cream for the eating pleasure and got so constipated I didn't poop for weeks! - I don't recommend the ice-cream strategy =).
THE EARLY HEALING PLAN:
After some time feeling like there was nothing I could do and wanted to do, I decided to implement a healing plan using a variety of sources. I inundated myself with information, knowing that the more I knew, the better off I would be. Here a few things that I did in the beginning:
- Ordered ~ 10 books off amazon dealing with nutrition, diet, PTSD, DP, recovery, miracle recoveries/mindfulness meditation, spirituality (ill get to mindfulness later)
- Searched web for positive healing stories across a variety of illnesses
- Crazy, Sexy Cancer (one of my favs)
- Searched dpselfhelp for positive posts and recommendations (made lists)
- IGNORED posts that were negative and fatalistic
- Refrained (not outright stopped) from reading dpselfhelp. If I did read, they were only in the recovery sections
- Physical activity (very light at first, knowing how weak I was)
- Maintained relationship with psychiatrist, eventually came off xanax (knowing that it's incredibly addictive and unhealthy to be on for long periods of time). Eventually only was on (and still am) Effexor XR. I am currently on a slow taper down program.
- Note: Just because my recovery was concomitant with my use of effexor, I cannot say that it did or did not help. Simply stated, as I recovered, I was on effexor, so it may have contributed, but I'm certain most of my recovery came from other things mentioned herein.
- At this point, I am almost off an Effexor XR taper that I extended for 6-8 months with a very slow taper. I have had no discontinuation symptoms because of how slow I have been doing it
- Absorption - involving myself in activities that did not allow me to DWELL on my symptoms.
- Note: this was not perfect, I would still get stuck in my symptoms again, but in my life I was engaging in new activities and friendships. Eventually, as I started feeling better, my focus would increasingly go to normal things and away from my symptoms
- Spiritual/Religious guidance - books/personal reflection
In the beginning it was very difficult to implement the appropriate steps because the overwhelming pain was incredibly difficult to move through, over time, however, things became easier and easier, although at a painfully slow pace. knowing I eventually needed to re-engage the world, I decided to get a job working outside to kill some time, keep my mind off things, and socialize. This was SO HARD in the beginning because I felt so awful, but I kept pushing myself knowing that wasting away in my own suffering was not going to heal me. Our environments and the normalcy of that environment is a critical healing factor. While we feel far from normal it is important to strive towards normalcy - it builds hope and helps you heal. During this phase, I was working (despite feeling terrible and detached) and met a new group of friends. Through one of them I was introduced to my current girlfriend. We have been dating for 2.5 years and she has helped me tremendously regain a sense of normalcy. She helped me take my mind away from the symptoms and onto every day things. After about of a year of suffering, I decided that I needed a plan to get back on my feet or something to work towards. I ended up applying to graduate school, but at the same time was extremely anxious about whether I was psychologically ready for something like that (Keep in mind, I was nowhere close to feeling better at this point) Moreover, I though that my intelligence had been permanently damaged and that I would feel normal again. Since that point, I got into a top 5 engineering graduate school and with some hard work, finished with close to a 4.0!
ADVICE ON FASTEST WAY TO HEAL:
There is no magic bullet CURE for DP/DR/Anxiety. The mechanisms in the body/mind/psyche are far too complex. From my experience I believe STRONGLY that DP/DR is the product to EXTREME shock to the brain, body, and mind (psyche, personality, worldview) and this shock has a chemical and biological component that throws the health of your organism way off balance. The BEST way to alleviate these symptoms is to STOP searching for a magic bullet cure and to start making choices in your life to energize and heal your body and mind. I believe that our Mind/Body will heal given the right conditions. To do this, you have to start thinking of healing over the long term and not expecting to eat some magical chocolate bar or take some pill that will cause you to 'wake up' one day. The way towards alleviating these symptoms is to give your body the best chance as possible to heal by being as healthy as possible.
Here are the cornerstones of what I found to be the most powerful healing modalities for recovering completely from DP/DR. If you are to continue to do what you have been doing you will continue to get what you have been getting. You must change these aspects of your life.
- Eliminate junk foods from your diet. You are preventing your body from healing by providing limited nutrients and probably compromising it by ingesting synthetic chemicals the body was not intended to metabolize.
- Eliminate heavy consumption of red/meat. I am not saying you need to be vegetarian, but drastically reduce your read meat consumption.
- Vegetables, Vegetables, Vegetables - seriously, there is no better medicine
- Start Juicing (mostly vegetables, some fruits) *SO IMPORTANT*
- (See "Fat, Sick, and Nearly Dead")
- (See "Raw for thirty Days")
- Eliminate heavy caffeine use
- No drugs/Alcohol - it will set you back, perhaps completely.
- Book: Chris Carr - "Crazy Sexy Cancer” (Great Health Tips)
- CDs: Tony Robbins - "Living Health
Cardio: In the beginning I was too weak to do this a lot, but I started in small increments and over the long term I definitely felt better. As I increased my energy, I felt like things began to heal faster. This doesn’t happen overnight. The idea is to get the body back into a state of better health and keep it there. As you maintain this higher level of health, things begin to heal faster.
Yoga: I took up Yoga after about a year or so of suffering. I felt the yoga helped ground me and clear my mind. Again, this was not overnight! I stuck with it and slowly things got better. I think this helped me further feel grounded and present (i.e. I exist!)
Note: I didn’t get into weights, but I cannot imagine that would hurt. I do think some form of cardio is one of the best things you can do for yourself though.
- Mindfulness Meditation (Breath Mindfulness)
- Eliminate Toxic Relationships
- Do Normal Things! (i.e. what others refer to as distraction)
Mindfulness Meditation: This was a MAJOR factor in helping me recover. In the very beginning I was so distraught that I could not sleep. Literally, the suffering and pain (mental and physical) was so INTENSE I couldn’t relax enough to fall asleep at night. I knew that I had to somehow relax, even if it was just a little bit more, to get me to fall asleep. I bought a meditation pillow and would try to sit for 20-30 minutes and focus on my breath (Book: Mindfulness in Plain English). This form of concentration helps to create peace, but for me all it could do was take the edge off my pain. I had no other choice but to do this before bed each night if I had any hopes of getting ‘rest’. Moreover, the mindfulness meditation made me feel more ‘present’ in my body. This helped me feel less like I was just floating eyeballs and made me feel again like I had a body!
Forgiveness: If there are aspects of your past or present that you are holding anger and resentment towards, you must find a way to forgive to create some space for your own recovery. Know that any suffering that you experienced from others (friends, family, etc.) is at some level caused by their own suffering. Recognize that we all want happiness and that when others do mean things it is because they are unhappy or suffering at some level. Forgive them. This will help them heal as well.
Eliminate Toxic Relationships: The best environment for healing is one where their is support and understanding. If you have relationships that are hindering your ability to recover, forgive them, but then consider saying goodbye!
Do Normal Things: This will be hard at first, much like it was for me, but over time this sense of normalcy helps to make you feel stronger and healthier. This is a critical component of your recovery. If you do not start to engage in normal activities (even if they are painful/uncomfortable) your sense of doubt and hopelessness will increase. When you start re-engaging your normal life, you will slowly loose focus on your symptoms as you feel better from the other lifestyle choices you have put in place (physical, mental, diet, etc.)
COMMITMENT TO HEALTH:
I want to feel vital. While I have recovered from my symptoms, I still would like to feel as good as I can. I know you do too. If you are interested, let’s create a plan together to commit to certain lifestyle changes that will increase our health in 2014. I will do this with you. In fact, we can all do this together. Reply in the forum if you are interested in creating a health goals together and creating some mutual accountability. If this sounds like something people are interested in, we can decide about the best way for us to work on our health goals together.
Thank you to others in this forum that have helped me by sharing their stories.