The First Medication Change of 2020

Photo by Olga DeLawrence on Unsplash

I had plans for 2020. I am sure there is not one person that was not affected in the mental illness community that was not affected by COVID-19. One of my major plans was to lower Seroquel to a more manageable level that I feel less like a zombie in the morning, then the novel coronavirus hit, and I was using Zoom to meet my psychiatrist.

One of the fears is that not seeing me in person means that the trust that I spent over a year building that was crushed by the coronavirus. It is not that the trust was not there, but instead, you never know as a medical professional how isolating like I was advised to do would affect me in different ways. I understood this, but I was also frustrated. There is no doubt I had to learn patience (this came in life coaching.)

The idea of waiting is new to me, but not all is bad. After months of back and forth and resisting the urge to make changes on my own, I decided to broach the subject again, and the result was more to my liking. It was an incremental change from 400mg to 300mg, but it has made a difference. I still sleep, but I am waking up at a better time while still being rested. It is important to note that having my CPAP machine helps me get to sleep quicker, and that is important to note as to why the case I made was valid over time.

There is always this point that I need to make: medication changes should always go through your psychiatrist or medical professional. They are the ones that got you on these medications, and they are the professionals. I can’t stress that enough. Change is good but in the right way. The next step is the continual work on my social anxiety and panic attacks, which have been better if I am honest. That has been in the changes that have happened to my approach to stay in the moments of now. The tools I learned in life coaching have helped me create space with my own physics. Thank you as always for reading.

Thank you always for reading.

For everything social media for James Edgar Skye visit my Linq site here. 

My Life Coach can be reached at groundsforclarity@gmail.com. If you feel suicidal, Kim specializes in helping those who are like me; I recently had my own brush with suicide again in October, and Kim was a pivotal part of why I am still here with her life coaching alongside her ASIST training.

For ASIST Suicide Prevention Training Program | LivingWorks please visit here: https://www.livingworks.net/asist

Buy my book on Amazon through my website.

Always Keep Fighting

James

Photo by Christina Victoria Craft on Unsplash

I Still Have Anxiety

I had severe painful anxiety and panic attacks in my early twenties (thirty years ago) and have had anxiety off and on ever since–increasing in severity after my postpartum depression and bipolar diagnosis and the start of being giving the revolving cocktail of psychotropic medications.

Medications never helped my anxiety, but instead made it worse. Klonopin helped and rescued me initially but after a while my anxiety and other symptoms of mental illness increased. Also, I was super sensitive to the side effects of other psychotropic medications and had adverse reactions to many of them.

I was one of those people who could not take psychotropic medications, They never seemed to help me but instead made me feel worse. Medications help many people. I was just not one of them.

I stopped taking Klonopin one year and five months ago and soon after stopped taking all psychotropic medications (medically supervised). When I first went off Klonopin, it felt like I didn’t have anxiety anymore. This surprised my Psychiatrist as he has helped many patients go off Klonopin and other Benzodiazepines and noticed great improvements in all of them. However, he said they still had some anxiety.

After finally stopping Klonopin, the contrast and beauty of feeling the difference of inner peace and well being (for me) was so sharp that I thought I no longer had anxiety. Recently I’ve learned I am still experiencing some anxiety but much less significantly. My anxiety is manageable and I have learned better coping techniques than I had before.

After reading, researching and watching many videos on the subject, the light bulb finally went off in my head. For years the increase in my anxiety, manic like symptoms, insomnia, depression and suicidality was blamed on me and my own increasing mental illness and inability to cope with it.

Instead the severity of my mental illness symptoms increased because of the side effects and my adverse reactions to the large cocktails of psychotropic medications I took for over two decades of my life.

“You do not have Bipolar Disorder,” said Dr. S., my new psychiatrist about a year ago. “You have PTSD and borderline personality disorder but you do not have bipolar disorder.

“But I had all the symptoms of bipolar,” I replied dumbfounded.

“Borderline Personalty Disorder has similar characteristics and in time people can learn coping strategies so they no longer need medication,” Dr. S. replied.

“But I was so sick. My symptoms were so severe.”

“That was caused from the Klonopin. Klonopin can cause a lot of damage, especially when using it as long as you did at such high doses.”

It was a lot to take in at first but in time I embraced the release of my bipolar disorder label.

Since becoming psychotropic medication free, I feel better than I ever have since I became diagnosed and labeled with many labels of mental illness over twenty-six years ago.

Once I was thrown into the mental illness club and psychotropic medication club, they were hard to leave. The mental illness club is an exclusive membership and it seems once a member always a member. The psychiatrists never want you to leave and say you can’t. I was brainwashed until I believed and accepted I had bipolar and other mental illnesses. I had no choice at the time, but to accept it.

“You will never be normal. We can get you to live a functional life, but you will never be normal,” said a psychiatrist soon after my initial diagnoses.

“You must take these medications for the rest of your life. You can never stop taking bipolar medications.”

Those are devastating, destructive, defeating and heartbreaking comments for anyone to hear, especially at the prime of their life–like I was.

Today we are finally more informed and we do have a choice. I fought my diagnosis for years for a reason. The reason being… they could be wrong and they were wrong. I was misdiagnosed.

I just wanted to add… This is my story and does not happen to everyone. I just want to increase awareness and give people hope if I can. Please always remember everyone is different and everyone’s journey of recovery is unique.

I am psychotropic medication free, mentally well, am living a good life and am fully capable of doing anything I want currently in my life. My only problem is now picking up the pieces from the destruction after living a mental illness life for two decades.

After I became medication free, I realized that my anxiety is very manageable and I don’t have other symptoms of mental illness. Therefore, my severe symptoms were not caused from mental illness but were from the side effects of psychotropic medications and MOSTLY from my physical addiction to the Benzodiazepine, Klonopin and the withdrawal effects from it.

When I first started taking Klonopin twenty five years ago, after I had been using Klonopin for a few months, my body adjusted to the levels of Klonopin in my system and cried out for more–mimicking increased anxiety. My doctors and I blamed my anxiety while all along it was the adverse reactions, side effects and withdrawals from Klonopin.

There is no other explanation. There just isn’t. My pain and severe symptoms and years of suicidality came from the damage caused by using Klonopin and other psychotropic medications for too many years.

To reiterate, my psychiatrist believes I was misdiagnosed and that I never had bipolar disorder. At first, I didn’t believe that but now I do. I have PTSD and borderline personality disorder but no bipolar disorder.

There are many people misdiagnosed with bipolar when they have PTSD instead and/or borderline personality disorder.

I lost years of my life and yes things could have been different, but this is my reality and I will make the best out of the rest of my life. I will keep fighting and finding new joys and purposes for my life.

I know how blessed I am and am enjoying the beauty of living.

Recovery is possible: I am living proof. 

© 2019 Susan Walz | myloudwhispersofhope.com | All Rights Reserved

Photo by boram kim on Unsplash

How to Become a Professional Patient – Guest Blog Spot

This is another Guest blog spot from Emily K Harrington, please enjoy.

How to Become a Professional Patient

When you first start psychiatric medication, you honestly don’t know what you’re doing. I wish that there was a class on how to be a good and helpful patient that anyone could take for free when they get their first script, but instead, I will write out the things I believe are crucial in order to make significant progress aided by meds.

Although I am not a doctor or any sort of health professional, I do consider myself a “professional patient,” due to the past 13 years of dealing with bipolar disorder, major depressive disorder, and generalized anxiety disorder. All that time, I have been in treatment with psychiatrists, psychologists, therapists, general practitioners, and specialists in various fields. The following is what I’ve learned.

THE RULES

  1. One psychiatric medication does not work the same on everyone. And if you’re already telling other people about your meds (what works for you and what doesn’t), then please read the disclaimer that needs to come before any advice you hand out.
  2. Sometimes a psych med has the effect of causing health problems, making things worse, or affecting you in a way opposite of its intended purpose. An example is that for some people, some antidepressants can cause suicidal ideation, and some antipsychotics can cause hallucinations. These effects happen to a small minority of people, so this doesn’t mean you shouldn’t try them. Because…
  3. Psychiatric medication can save your life. A med can bring you back from the brink. A med can improve you enough to be able to use coping skills, which is difficult in a nonfunctional place…
  4. Doctors are stabbing in the dark when you begin treatment. This means that you will probably have to try more than one medication before you find one that works. Once you find one that works, then you will need to…
  5. Adjust your dosage and time of the dose with the guidance of your doctor. Often, a medication that works for you a little bit can work for you a lot after you figure out what time(s) of the day make you feel best. This is often called “tweaking the dose.”
  6. To learn how the dose needs to be tweaked, you will need to KEEP NOTES. Print out a mood chart from the internet (search “mood chart”-it’s easy). Go to Kinko’s or the library if you don’t have access to a printer. I know some apps do the same thing, so look for those instead if you’re inclined. Or just keep a notebook. It doesn’t matter how you do it as long as you have the following information in an easy to read way:
    • Your daily mood status
    • What you are taking, what time and how much (you don’t need to write down the things that don’t change every day)
    • Your mental illness symptoms, especially anything severe or unusual for you
    • Other health problems
    • Any problem behaviors or events (like self-harm or episodes)
    • Any insight you notice about how you are being affected
  7. Bring your notes with you to the doctor. Some doctors’ appointments are as short as 10 minutes, so every sentence counts. Having all the information on hand eliminates the need for telling long, rambling stories full of irrelevant details. This is probably the most important thing to do in your relationship with your psychiatrist.
  1. If you are prescribed more than one medication, only change your regimen one way at a time, for a trial period of a week or more. Ask your doctor what adjustments are appropriate for you to try if you feel you have an insight about your medicine. My doctor allows me to do trial-and-error testing with the timing of my 6 daily doses because he now trusts my judgment. The reason you should only make one change at a time is that if you’re making multiple changes at once, you cannot clearly determine what is helping or hurting you.
  2. You will probably have to try multiple medications and multiple mixes of meds before you find what works. This process sucks, because the ones that don’t help leave you feeling hopeless of getting better, and sometimes they even make you worse. This is why note-keeping is so vitally important; it allows you to limit the amount of suckage you experience with a med and move on to the next trial, instead of waiting around forever on something that is not right for you.
  3. If your doctor’s office has an online service, learn it and use it.
  4. Pick a pharmacy that is open late hours, 7 days a week. Walgreens and CVS have many stores that fit this bill. Walgreens also has a website and app, and you can put your prescriptions on auto-refill so that you don’t forget to refill them (this does not work with controlled substances like benzodiazepines, which are restricted). If you do not have an auto-refill option online, you can request one in person or over the phone, directly from a pharmacy technician.
  5. Find ways to set reminders to refill your medication. This seems simple and is not. Phone alarms and calendars are options for reminders. Take this very seriously. Missing a dose can send you spiraling.
  6. Ask your doctor if you can get 3-month prescriptions so that you don’t have to go to the pharmacy as often. This is a good practice for preventing missed doses and late prescriptions.
  7. Set alarms on your phone to remind you to take your medication. If this doesn’t work, then set another alarm for ten minutes later. No joke, this is still a paramount practice for me, even after 13 years.

Congrats! You survived the bulk of this course. Now let’s wrap up with another look (for memory’s sake) at the framework of guidelines:

  1. One psychiatric medication does not work the same on everyone.
  2. Sometimes a med has the effect of causing health problems, making things worse, or affecting you in a way opposite of its intended purpose.
  3. A med can save your life.
  4. Doctors are stabbing in the dark when you begin treatment.
  5. Adjust your dosage and time of the dose with the guidance of your doctor.
  6. To learn how the dose needs to be tweaked, you will need to KEEP NOTES.
  7. Bring your notes with you to the doctor.
  8. If you are prescribed more than one medication, only change your regimen one way at a time, for a trial period of a week or more.
  9. You will probably have to try multiple medications and multiple mixes of meds before you find what works. This sucks.
  10. If your doctor’s office has an online service, learn it and use it.
  11. Find ways to set reminders to refill your medication.
  12. Pick a pharmacy that is open late hours, 7 days a week. Walgreens and CVS have many stores that fit this bill.
  13. Ask your doctor if you can get 3-month prescriptions so that you don’t have to go to the pharmacy as often.
  14. Set alarms on your phone to remind you to take your medication. If this doesn’t work, then set another alarm for ten minutes later.

This advice largely applies to other medications, prescriptions, and doctor visits. This is helpful for anyone with a serious illness, not just mental health. This is how you become a “professional patient.”

I hope you gained something from this course written by a totally unqualified stranger. All I can say is that these are things I’ve fought to learn over the past 13 years, and this was not easy knowledge to acquire. Now, these practices are an enormous part of how I stay functional. I do have bad times sometimes, but I also have times when I am in partial remission and feel genuinely okay or even well. Feeling well is a goal worth working for.

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To Stay on Meds, or Not to Stay on Meds

That is the question.

The age-old question that every mental illness suffer will face in this life, will I be on these medications forever?

I am not a medical professional and all medication changes need to be through your doctor.

I wish I could say that medication is not forever, but there is no cure for mental illness, and there is a good chance that you and I will always be on some form of medication unless they find a cure. Yes, some people in the mental illness community have found success getting off medication, but they all turn to alternatives like marijuana (which makes sense if that works for you.) But, medication has its place in mental health. It is just the truth of it, almost twelve years in this mental illness life for me, and the only medication I have successfully gotten off on is anti-depressants. Medication can be the best and worst thing. I have been through just about every anti-depressant in the market, and yet they always stop working, eventually.

That is not to say that I am not making plans to begin to make changes and possibly get off some of the major medications in my life. It starts with talking with my doctor. Right now, I would love to find a way to get off Seroquel. It is the one medication that I see as the cause of a lot of nighttime anxiety. I am torn between the need, I can’t seem to sleep without the medication, and the need to not have the side effects be a major part of my life.

The Struggle to Stay on Medication

When they say the struggle is real, they might have been talking about the mental illness struggle to stay on medication.

What I struggle with is do the side effects outweigh the effectiveness of the medication. I often turn to my Seroquel because it is my main struggle medication. The positives are that it is effective as an antipsychotic medication, and it is the only thing that has been effective as a sleep aid.

The downsides of Seroquel are plenty. I take a max dosage, so in the mornings it can take up to hours to fully wake up. It takes two to three hours to get to sleep. It causes me nighttime anxiety, and while not always, it is more often than not. It affects me throughout my day because of the high dosage. The worse part is there is no alternative according to my psychiatrist, and it makes me feel worse more than making me feel better.

This life that we were given will never be easy. There is a good chance that you will struggle with one of your medications, and there might now always be an answer to the question: “to stay on medication, or not stay on medications.” That is something each one of us must answer for ourselves. Stay active in the fight.

Always Keep Fighting

James

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When are you done?

I initially refused to start medication because I was afraid I might have to take it forever.

Now, being on it – my fear is gone. I am no longer afraid to be medication for the rest of my life. I appreciate the change it brought to my life, and I am rather very thankful for the help it gave me.

However, not everyone seems to see it this way.

One most frequently asked question from my family and friends would be – “When are you planning on cutting it off? Do you still get anxious and sad if you miss a dose?”

Truly, I don’t know. I don’t know when I would be getting off these pills and yes, I think there are some effect that takes if I miss a dose for few consecutive days.

Why is it that me, the one who is actually facing this is OKAY, doing life with my psychotropic medications have to reassure others that I am okay?

I understand my families and friends are coming from a place of care and compassion.

However, I don’t know how to tell them I don’t plan on getting off this medication anytime soon without giving them the thought that I am “dependent” on it.

What am I supposed to do?

PTSD is Like the Overdraft Fee in My Memory Bank

Memories—some I cherish and want to remember forever and some I want to forget.

A memory is the faculty by which the mind stores and remembers information. I wish we could pick and choose our memories. Some memories are there forever and easily retrieved. Some memories are gone forever—vanished into thin air. Poof.

Image result for disappear I dream of Jeannie GIFs

My memory bank is much like my bank account – I don’t have a lot in it. Sometimes it feels empty, so I can’t retrieve or recall what I want or need. I lost a lot of memories due to the many electroconvulsive therapy treatments (ECTs) I had and also from being on a high doses of Klonopin (Benzodiazepine) for over twenty years.

I wish when I had my ECTs that I could have picked and chose what memories to erase and which memories to keep. Wouldn’t that be nice? That of course is not possible, but if it were there would be many more people having ECTs. That is for sure.

My memory bank and bank account are similar in other ways, as well. Sometimes they both punish me. For example, if I spend more money in my bank account than I actually have, I get charged overdraft fees. I don’t want them. They are a waste of money and that makes me angry. These unwanted and unplanned fees interfere with my budget and my ability to pay other bills and expenses.

Image result for no money in bank

Flashbacks are similar to overdraft fees. Flashbacks are not planned and are definitely not wanted. Flashbacks come back to haunt me and seemingly punish me. Flashbacks can sometimes interfere with my daily activities and even the quality of my life.

A flashback is a sudden and disturbing vivid memory of an event in the past, typically as the result of psychological trauma or taking LSD.  Strong feelings are attached to my memories as if I am eight years old again. I return to being that scared, hurt and shamed little girl, as if it were today.

A flashback can feel as though you are actually being drawn back into the traumatic experience, like it is still happening or happening all over again. They can occur uninvited, stirring up images, sensations and emotions of the original event. A flashback can be so overwhelming to one’s sense of reality, that many who suffer from them believe they are reliving or re-experiencing their trauma. A flashback is able to mimic the real thing because it provokes a similar level of stress in the body. The same hormones course through your veins as did at the time of the actual trauma, setting your heart pounding and preparing your muscles and other body systems to react as they did at the time (Rothschild, 2010).

As I have mentioned in some recent posts, my PTSD symptoms have been worse lately since I stopped taking psychotropic medications. Without psychotropic  medications, my memory is slowly improving and becoming clearer. I can focus better. However, my brain is now more exposed to some painful memories and wounds from past childhood abuse. With a clearer mind and better memory, old memories have resurfaced in an unwanted stronger and bolder way. Psychotropic medications can act like a band-aid and inhibit brain activity in both good and bad ways. I no longer have a band-aid for my brain to cover and hide my painful memory wounds.

Image result for no bandaids

As the years of my life progressed, memories from my childhood abuse increased and feelings associated from those painful memories increased in time. The older I became it seemed the more intense the feelings associated with my past memories became. It took many years before I understood what was going on with my feelings and dissociative symptoms. After I understood it better, I had a better grasp on it and could learn to counterattack it. I am still working on it and will most likely need to for the rest of my life.

After something or someone triggers my memory, I return to a memory from the past and/or flashbacks occur. I feel like I did when I was a child. I return to that time. I believe as a child my brain protected me so I could survive. Now I am living them again and feeling all the emotions that went them.

Two nights ago, I was awakened from my sleep and had flashbacks. I couldn’t get them to stop and I couldn’t fall back to sleep.  Lately more memories of my basement from my childhood keep entering my mind. It is strange and kind of scary at the same time. I can’t explain it.

I never lived this life before. This is my first time and I am doing the best I can. It seems when you live with mental illness, each day continues to be a new learning experience. There is never a dull moment inside my mind and brain. I guess that is a good thing. Who wants to be bored? It never happens for me as I continue to learn and grow more every day. I must

Now that symptoms from my bipolar have dissipated and improved lately and PTSD is rearing its ugly head more often, it is time for me to research and learn more about PTSD. I researched bipolar disorder and learned everything I could after I was first diagnosed with it and for many years after. Now I am going to focus more on PTSD. I find it all fascinating. The brain can be an organ that causes a lot of pain and destruction for a person living with mental illness, but you have to admit it is absolutely amazing and fascinating at the same time.

Image result for college of life

So much to learn. The college of life is never over. Happy first day of school again and again and again…

By the way I am going to continue to work on improving my memory bank and bank account. I wish they were both bigger and had endless happy funds I could retrieve.


Copyright © 2018 Susan Walz | myloudbipolarwhispers.com | All Rights Reserved

Sink or Swim – a Poem

Introduction to my poem…

I wrote the following poem a year ago after getting two severe physical syndromes that began my quest to eventually become medication free in a less than desirable manner. For those of you that have been following my blog you know my scary and dangerous  story.

Please read my two posts I wrote about a year ago that describe the two syndromes I got:

  1. My Bipolar Medication Nearly Killed Me Because I Didn’t Get My Sodium Levels Checked 

  2. Bipolar Medications Can Be Dangerous

They are valuable posts that give awareness to the possible dangers of psychotropic medications and the importance of getting your blood levels checked regularly which I didn’t do enough apparently.

After discontinuing my bipolar medication, Trileptal, the only medication I was still taking in my medication cocktail was Klonopin. I took only Klonopin last year and always tried to decrease it from 5 mg to less. I made it to 3 mg a day but could never got below that. Klonopin withdrawal symptoms were too severe and I had to take my Klonopin. The severe side effects mimicked severe anxiety, depression and continuous suicidal ideations. I never realized that for a year I had unknowingly put myself in a state of perpetual continuous Klonopin withdrawal. It was a very difficult year to put it mildly.

After my suicide attempt they stopped my Klonopin cold turkey and I was forced into a severe state of Klonopin withdrawal symptom with unbearable symptoms lasting over two months. I am still medication free and have little to no anxiety. I feel most of my obstacles I face today are caused from mental illness, but not from the direct symptoms of mental illness itself but the damage mental illness and stigma caused in my life for over twenty-five years. Some of the many casualties from the war of my mental illness were losing my career, home, marriage, money, friends, dignity and identity. I am still picking up the pieces and trying to live the best possible life I can live.

I am trying to make this time in my life the best time in my life.

This was a quick overview to explain the reason I wrote this poem and a little bit about how I am doing today.

Now for a lighter moment—my poem.

I hope you like it.

Much love and hugs, Sue 


Sink or Swim

My mind drifts,

floating,

fleeing,

flowing

aimlessly adrift.

Scattered thoughts

fill my mind,

swirling confusion,

questions flowing

freely inside of me.

What will I be?

What will become of me?

Who will I be

with a bipolar

medicine free brain

inside of me?

Bipolar medication

helps many,

but has always

been my enemy,

occasionally a frenemy.

For twenty years

and many tears

I tried my best

but failed the test.

I tried them all,

combos, big and small,

purple, pink, blue, green

and everything in between.

Far and wide

I took the ride

on the bipolar medicine

bicycle, tricycle, cycle

trial after trial

for a long while.

Medicine treatment was a fail.

Couldn’t keep up, swim or sail.

No more meds for me.

Recently became sick as I could be.

Sodium level dropped,

flopped and plopped,

meds stopped.

I became unsalty

and faulty,

untasty,

and wasty,

pasty

and pale.

Body became bloated

from water that floated

throughout my body and being.

I was not a pretty sight to be seen.

Water retained,

weight gained,

face and body puffy

softly full and fluffy.

Too many long years

without medical mirrors

caused me to become very ill

from taking my Trileptal pill.

There are no more bipolar meds

left for me

none for me.

That was the last one,

my last chance,

my last hurrah,

the last straw,

hurrah, hurrah.

But wait,

I hesitate.Try another,

and another.

We got many,

make you thirsty,

take another,

we got plenty,

make you fat,

we got a pill for that,

make you dizzy

your hair frizzy,

here try another,

we got more,

lose your hair,

more to spare.

Bipolar medicine didn’t work for me

too many side effects,

ill effects,

adverse reactions,

they just didn’t work for me,

couldn’t keep me afloat,

and I fell off the boat,

but I can swim,

here I go,

sink or swim,

I can swim.

~written by Susan Walz

My Loud B;polar Whispers

Image result for sink or swim


Copyright © 2018 Susan Walz | myloudbipolarwhispers.com | All Rights Reserved