Anyone who is new and wants to know where this part of my journey is even coming from, feel free to Start At The Beginning and for those of you that are here again, welcome back! And for those of you that are new but only want to read this post or even just this paragraph and that is it, fine by me! Whatever your heart desires. I love you all!
I am writing this post partly for my own journaling but also to share. For myself, reading other blogs, as well as joining online groups relating to drug/medication withdrawal experiences, has been one of the biggest comforting outlets for this journey. Knowing that I am not alone and what I am experiencing is OK and part of this healing and detoxing journey. It can feel resistant as though I am mentally in the thick of it, and when having someone nod and smile and say, "if you just breathe and meditate a little bit you will be at ease!" and yes that DOES help, but sometimes it also helps to stand outside and shout and scream as well as finding others to relate to that have been through a similar experience. So for those out there that have publicly shared their story, thank you! It has benefitted me on this healing journey.
I wrote about this in my previous post, but the reason I decided to wean off of Vimpat was due to the side effects, a year in, began to manifest. I recommend reading my my prior post. Below shows a bit of what was written.
"After running the MRI for the third time since the seizures frequented last June, showing no change of the tumor at all, undergoing an EEG scan, as well as observing all my symptoms over the past couple months, we have confirmed that most of what is going on is coming from the toxicity that has build up in my system over the past couple years from the anti-seizure medication I have been taking. I have been experiencing noted side effects that have come in waves over the past couple years since I started this medication; the most intense one being that of disorientation and not quite feeling in my body. Its hard to describe the feeling. It feels like being a bit "stoned" and in a mild dream state. I feel within a dejavu state of mind, but also removed mentally from what seems normal and safe, with the inability to speak and operate. I perceive being in a state of terror with a churning sensation in my abdomen rushing up to my chest. This experience executes quickly, although it does not feel that way.
Other side effects from this medication that I have been confronting over the past years include: shortness of breath, itchy skin, mood swings, dizziness, short term memory loss, sinus infections, nausea, dry mouth, constipation, anxiety, panic attacks, over-emotion and many others. I would say since I started taking it, I have experienced about 75% or more of the notated symptoms, as well as others. Vimpat is a newer medication which has only been out since 2009, not having as much research and information os other benzodiazepines."
Since the segment above it has now been a little over four months since I have been fully off of Vimpat as well as Ativan. I spent the past year weaning off of the Vimpat. The Ativan, since I had been on and off of it sporadically, I decided to "Cold Turkey" and abruptly stopped taking without weaning off. Overall the sudden wean off was not a good idea but here I am. One thing I have noticed from these groups is how different each of our bodies react, yet how similar. I know others, who are on a benzodiazepine or psychoactive drug withdrawal journey, can relate in the sense that they would take the physical symptoms any day over the mental symptoms. The mind games that these psychoactive medications like to entail upon our brains, is terrifying! Since being fully off of the medications, I have still been experiencing symptoms, both physical and emotional, which have been changing, which is good but also scary. Sometimes I feel like as soon as I start learning how to deal with and control a symptom it transforms and changes. The symptoms haven't seemed to be getting any worse, just different. In fact according to my medical daily journal which I have been keeping, ultimately its been BETTER! Although, when in the midst of it mentally, it does NOT feel any better! I am grateful that I have been keeping a daily medical journal, as its a good reminder showing me PROOF that I am healing, because sometimes mentally I do not feel that way at all and my biggest fear is that I am going to remain "stuck" in my crazy hallucination aura like brain symptoms and never get out.
The emotional symptoms caused by this drug withdrawal, to me, feel far worse than any of the physical symptoms, as well as far worse than anything I have experienced naturally. It seems to me that the emotional symptoms make the physical symptoms more challenging also, as my mind seems to be playing a fearful game with my body, and altering my perception of reality. I was hoping that once off the drugs I would start feeling better; not yet the case! I do have faith though and feel that the universe is teaching me the medication meditation of PATIENCE. At this moment in time no matter what vitamin, what diet, what meditation, or healing session I am undergoing, as much as they may and do help; I am discovering that ultimately it is TIME that is the true healer. Also, as much as these online groups and blogs have been helpful they have also helped me discover that everyones time, symptoms, side effects, and experiences are a bit different. Listed below are the main mental withdrawal experiences that I have been feeling over the past year and especially over the past four months. All of them have not been 24/7 but seem to consistently come and go and are up and down and have also changed slightly or altered along the way.
I feel as though Ive lost my full sense of personal identity. Everything at times seems unreal and dream-like. I feel a loss of sense of direction, place, time, and surroundings. Sometimes when I am talking I feel like it is someone other than myself talking. Things seem distant and vague. This sense of derealization is scary at times as I feel like I am not in this body and don't know who I am. I feel like I am in a bad dream and need to be shaken awake back into reality.
NERVOUS, ANXIETY, PANIC, FEAR:
These past three months of being off the medication have been extremely terrifying. It hasn't helped that last time I checked there was a tumor in the brain, and although it hasn't changed grown or moved, last time I checked, that panic in my brain like to terrify me and tell me other stories. This feeling comes sometimes and it feels like a sudden, overpowering, chaotic and confused mental state of terror where I feel doubt-ridden and sometimes feel in a state of shortness of breath to the point of shakiness and hyperventilation with extreme nervous nausea and anxiety. I would say this is one of symptoms that seems to be present the most. I seem feel consistently in the flight or flight response with fatigue. In my medical journal I have labeled it FFF (fight or flight fatigue). When in this state I will feel like my heart is racing and palpitations, but then I will frantically take my pulse and it won't nearly be as high as I thought it would be. From this panicky state seems to come physical symptoms like shakiness and slight spasms. It feels like involuntary quivering, trembling, and distress. When I feel in this state I feel like a little girl going over the "what ifs" in my head. What if I stay this way forever? What if I am dying? What if the tumor is growing? What if my life is over? I have been seeing a few days here and there now where I don't feel this way! These days are beautiful windows of light that have been giving me the faith to hold on.
DEPRESSION, SADNESS, CRYING FITS:
This has been like a hopeless feeling of failure and regret. Sometimes these sensations feel so intense that parts of my mind tell me I would be better off dead. This side effect seems to be one of the deepest and darkest and my mind seems to often go into a space of regret. Regretting ever cutting my brain open, regretting ever taking any medications. My mind when in this state seems to hold onto those thoughts of life would be better had I never made those decisions. Yet here I am and I made them and now time to let go and stop holding attachment to them, although when in this space of depression that seems hard. There have been some days that it actually feels painful to smile. I have been trying to find TV shows, movies, books, and distractions, but even those seem to hurt my eyes to try to do as well as seem hard to even try to do. Sometimes having fun, being silly, and acting "normal" seems impossible, and I feel like an outsider alien looking in at other people and how much better their lives seem. I know I have already been a beautifully sensitive person, but since these withdrawal symptoms that seems to have heightened to a state that is not so beautiful, like crying and bursting into tears for no reason. I am learning to just have that be OK and to cry and let it out! But man it has been tough!
Above I spoke about how I am already a sensitive being but that emotional sensitivity seems to be over heightened throughout these withdrawal symptoms. The slightest provocation seems to upset me. At times I feel myself suddenly breaking out into laughter or drying or doing both without being able to control this outburst of emotion. These episodes feel unstable and seem to be caused by experiences and events that I normally wouldn't feel emotional about. Things I would normally shrug off seem to fill me with an outburst of tears, or with rage, or cowering in a state of terror.
Thank goodness the past couple weeks I have not been experiencing these, but towards the end of my wean off and the first couple months of being off I would have auditory hallucinations. This experience seemed to be a feeling that started in the lower abdomen where there is a fluttering nervous sensation that seems to rush up to the belly and then twirl up to the chest, to the throat, and up to the brain. This sensation is followed by creepy voices that at the time I know exactly what they are saying and it feels like a dejavu sensation, although afterwards I couldn't tell anything that they said. While this is happening there is often a sour metal like dripping sensation in my throat. It feels like I have just taken a hit of acid or some drug and going into a drug like panic sensation. There also is often a frightening come down sensation with an upset stomach, a head brain throbbing feeling, and a serotonin drop feeling. When I have felt this sensation coming on I always want to turn off any sounds whether it be music or voices or anything, as it seems to enhance the sensation. They seemed to last anywhere from 20 seconds to a few minutes. Thank goodness these seem to have subsided in the past couple weeks, but what I have been feeling now is more aura-like, almost like a being high feeling that is like a hallucination but much much lighter, however it seems to last longer; anywhere from 10 minutes to a couple hours. Its like a hallucination seizure like experience is trying to come but won't. There are parts of me that sometimes wish it would just come already so I could reset, instead of feeling like its trying all day to come. However deep down I know this is a good thing and is part of this detoxing experience, but its still frustrating, terrifying, and hard.
FORGETFULNESS, MEMORY DISTURBANCE:
This symptom is one that started even while on the medication, as well as some of the above symptoms also, which is part of why I decided to wean off. I often feel unable to remember things that I would normally ordinarily remember. Ive noticed its mostly short term memory that has been a struggle. It seems to be doing a bit better since being off, but is still a frustration. Like meeting someone new and having a deep meaningful conversation with them, and then perhaps running into them a week later, and they may look vaguely familiar but having no recollection of what we talked about or who they are. Obviously this is something that would happen on occasion even before the medication, but since the medication has been overly enhanced and to an alarming and frustrating point.
EXCITABILITY, OVER-ENHANCED SENSATION TO STIMULI:
This sensation comes about from all my senses being overly enhanced. This is one thing that has gotten remarkably better in the past couple weeks also! But bright lights are aggravating, being startled very easily, weird smells, weird tastes, and just feeling over-stimulated!
Vision: Like I mentioned, bright lights are alarming and sometimes seem to trigger hallucination aura experiences. Also the eye always seem to feel dry and burning. A more recent symptom has been feeling cross-eyed and seeing floaters and spots.
Hearing: This is a big one for me. I seem to wear ear-plugs 90% of the time. Everything seems much louder than normal and can also be startling. Another related symptom here that I have been experiencing is tinnitus. Lots of ringing in my ears, all the time, especially at night.
Taste: The taste that comes about often is a metallic sour taste even when having put nothing to taste in my mouth. Also the taste in general when I am am eating or tasting something seems to be distorted, either under-enhanced or over-enhanced. Sometimes I will take a bite of something and immediately the taste will make me feel nauseous or dejavu like. Its hard to fully explain, but the point is that throughout the wean-off and during these withdrawals, my sensation of taste has been distorted.
Smell: This sense seems to be over heightened immensely, and is also one of the senses that seems to stimulate aura like sensations. Smells seem creepy and familiar at times. Sometimes I smell stuff that is not even there to smell. Like it will smell like someone is cooking pizza and there is nothing being cooked at all in the house, so I wonder where the smell is even coming, and then that brings up fear and other sensations. Also a recent example that I have experienced, was the past month loving the smell of this particular incense and then suddenly last week having it be a smell that seemed to trigger aura like sensation and hating the smell to the point that now if I smell it I feel nauseated.
Touch: Again, similar to above, it is over-enhanced. Lately I have been enjoying touch though, as long as I know its coming and its not someone coming up fast behind me and me getting easily startled. But having someone hold me or hug me, or getting a massage has felt good.
Below are a list of other physical and mental symptoms that have come from these medications that I have experienced prior to, during wean-off, and/or during withdrawals:
- Sinus Issues!
- Itchy, burning, numb, staticky skin (especially scalp, but all over body)
- Weight loss
- Burning frequent urination
- Sore/Achy body
- Menstrual irregularities
- Eyes: dry, burning, pressure, itchy, seeing spots, vision blurry
- Ears: dry, burning, pressure, itchy, sensitive
- Shortness of breath (feeling winded)
For those of you that have been following and reading my entire blog, I would love to share with you that a couple weeks ago I was having a very intense day with lots of seizure activity and the ego brain kept telling me it was all that tumor thing growing and had nothing to do with medication withdrawals, so I ran to the ER. They did an MRI and sure enough, NO GROWTH! The tumor had not changed at all. This news has definitely been a relief off my chest and confirms what I already knew which was that what I have been experiencing is due to medication withdrawals, and has nothing to do with tumor. It has not made the withdrawal symptoms go away but definitely has helped quiet my mind and also re-assured me the power of intuition and my gut and that what my heart has been telling me is correct and how crazy the mind likes to convince us otherwise.
One beautiful thing that has been helping me through this is God. Faith! I have started going to mass almost everyday at 12:15pm. I consider it my benzo withdrawal group. Hehe. This has been a true test of my faith, and at this point I feel that it is just me and God. Like I said earlier I can take as many vitamins, tea, healing sessions, etc... but ultimately it is time, patience, and FAITH that I have discovered are the true healers; faith being number one! My biggest test the past few months has been being able to surrender to that and how to find the balance between surrender and holding up my sword and shield. My fear for surrendering has been that if I surrender that means I will die, and that is SCARY. I am learning more and more that yes surrender may mean death, but not necessarily death of my human body, but more so death of the stories and thoughts and attachments I am holding on to. I don't feel quite there yet but in this moment I surrender!
A week ago I woke up in the middle of the night to having an elongated seizure like aura at 1am which felt like an elongated panic aura that seemed to go in and out of hallucinations. I was fully conscious and aware and it felt like a dejavu rollercoaster fear sensation with body spasms and jolting. I was fully conscious and slightly able to talk but not fully. It seemed to go on and on and on and fear seemed to grow and grow and grow to the point where I had no choice but to surrender. I lay there in bed shaking and reciting over and over in my mind, "I surrender I surrender I have faith I have faith!"
At this time I have had one or two days with "windows" which I know doesn't seem like much, but even an hour or two during a day of darkness that has a light of feeling "normal" helps uplift my faith. For these windows I am grateful. Like I mentioned earlier no matter what herbs, diets, vitamins or therapy I do right now ultimately it is TIME that is the true healer. We have however, found an amazing doctor that seems to have a lot of experience with psycho-active drug withdrawals, as well as hormonal, pancreas, and thyroid related issues. He takes a very whole holistic outlook at everything and talks about the power of less being more and my body needing time, and rest. He talks about the sensitivity of the nervous system, and how much time and rest it needs in order to fully recover. I hope to continue working with this doctor so long as the universe provides the needed finances in order to do so.
Another blog post will be coming, whenever the time is right. And like I mentioned, I didn't even feel "ready" to post another post. However, felt inspired to do so by others who have shared their healing story with me. The power of sharing! Here I am. I am sharing. I stand here rooted in my body! Alive! Amen. And, for that I am grateful.