Ketamine: Addressing Questions and Concerns

Hello and welcome.  It is Susan from myketaminestory.com.

As a brief summary,  I write about my experiences and journey with Ketamine Therapy on my website and also for The Injection and Infusion Clinic of Albuquerque.  I have a long history with treatment resistant depression and anxiety disorders.  My personal mental health care resume includes numerous failed medication cocktails, ECT, Cognitive Behavior Therapy, Talk Therapy and hospitalizations.  I admit I understand how all of these treatments could potentially help, but they never did for me.  It was a little over two and half years ago that I was introduced to Ketamine for depression.  I am alive today because of a drug that is raising many questions and concerns from the professional world.

I can confidently state that the fear others have about Ketamine will not stop me from continuing my treatments.  I am not afraid of Ketamine.  I am, however, terrified at the thought of not being able to afford my therapy.  The panic I feel when images of something tragic happening to my doctor makes my Ketamine Advocacy all the more important to me.  If I no longer have access to a physician or nurse practitioner willing to administer Ketamine, I am convinced my story would quickly conclude.  Why?  Why do I believe that my depression would definitely kill me?  The answer is crystal clear to me.  My depression is continually lifted and I am now capable of living the life I was meant to.  I have seen the possibilities.  I have had long periods of time symptom free.  Would you want to go back to that cave I referred to in my last post?  Me neither.

I am speaking up.  I want to make sure I never lose the only treatment that has given me hope for a future.  I am willing to take on the tough questions and concerns. Ketamine is hope for treatment resistant depression.  I am proof.  I want to educate.  I want others, like me, suffering with TRD to be aware that Ketamine is an option.  It has been my only hope.  I went 45 years suffering with profound depression and anxiety disorders with no relief from any of the traditional methods of treatment.  What I do have are plenty of horror stories to share.  I was fortunate to be told about Ketamine back in 2015 and my life has only continued to improve with the aid of Ketamine therapy.  I often fret over the idea of someone ending their life because they never heard of Ketamine therapy for depression.  That could have been my story.  It almost was.

My success with Ketamine treatments pushes me repeatedly to write.  I  am sharing parts of my life that are not at all flattering.  It can be extremely uncomfortable.  I know that I need to show the depths of my desperation for understanding. Depression is complicated and frequently misunderstood.  My primary motivation is to write based on my experiences with the hope of reaching out to that lost soul, I once was, with a life line.

I started my Ketamine infusion therapy with a series of six infusions over a two week period.  I responded.  I have had no success with any previous treatments for my depression.  I was slightly hopeful following my first infusion.  I felt, relief.  I can best explain the feeling as a small break from the OCD thinking, anxiety and darkness.  It was as though someone turned on a nightlight for me.  I remember that I was aware of being able to take a full breath with ease. I could truly breathe for the first time.  I habitually held my breath.  My anxiety made breathing painful and that often created even more anxiety for me.  So, when I was left without the discomfort I felt when just breathing, I was actually shocked.  It was such a pleasure to have even the briefest glimpse at what might be possible for me if I continue to respond to Ketamine treatments.  It has been a frustrating task trying to locate a qualified professional to administer Ketamine at a price I could afford.  It breaks my heart that many will never be able to afford the initial 6 recommended infusions.  Many of us, myself included, could never entertain long term Ketamine treatments which for me is a reality.  The current average price per treatment around the country is $400-$600 or so.  It is unrealistic for many.

I am currently having Ketamine administered by intramuscular shots.  There are not too many providers offering IM Ketamine shots,  so I was thrilled to learn that The Injection & Infusion Clinic of Albuquerque is offering them as well as Ketamine infusions.  I have been getting Ketamine every two weeks for over two and a half years.  I have had tremendous relief from my depression and anxiety symptoms.  I am grateful to my doctor, whom I never worked with prior to my Ketamine regimen, for being open to listening to me advocate this unconventional use of the drug.  I am forever appreciative of his willingness to work with me financially.  We have learned so much together.  My doctor has been able to see my positive progress and it excites us both.  He is now treating a couple of his patients using Ketamine with success.

I have a strong desire to answer all these questions I have been asked over the past several months.  I am really excited to announce my new Q & A blog series.  I was trying to discover a creative method for setting up a question and answer style blog but quickly realized I was once again being self indulgent when I only want to educate.  I will draft an interviewer/interviewee style with intentions of making it quick, direct, and worthy of reading.

In my first Q & A series I am introducing my son, Matthew.  It was during his Freshman year at Virginia Commonwealth University that his father read an article on Ketamine for depression.  We started saving our money so I could try this experimental treatment. I responded to a medication for the first time.  Matthew has had a front row seat to my struggles with failed treatments and how they have destroyed me in the past.  My depression and anxiety has affected the whole family.  That article offered my family hope. I had none.  My family, they did a lot of work when I was unable.

Matthew was selected as one of the few freshman to present his finding and have his paper, Ketamine, a Brighter Future for Those in Darkness, published.  It was in the beginning of my therapy with Ketamine that Matthew researched Ketamine and wrote his paper.  An interview was a necessary component to his class assignment.  I decided the best way to introduce my first question and answer blog was to go back to the beginning. My son interviewed me following my first two weeks of Ketamine infusions back in March 2015.  I feel his work should be honored in my attempt to raise awareness on the benefits of Ketamine for Treatment Resistant Depression.

The following are the interview questions Matthew Gayhart asked me for his research paper.  I should mention these questions were asked of me back in the early part of 2015 and the information about Ketamine use for depression was extremely limited. There were maybe a dozen or less locations offering Ketamine Infusions worldwide.  It is because of my experience and difficulty with trying to find a Ketamine infusion clinic that I am constantly updating my Ketamine Provider & Location List located here and on my website.  I am dedicated to making it possible to find a Ketamine Provider near you.

I digress.

Back to the topic at hand.  This blog series, I want to spend time focusing on the numerous questions I have been asked over the last several months.  I decided on approaching the curiosity and concerns in a questions and answers format.  My answers are based on personal experience with Ketamine for Treatment Resistant Depression.

The following is the questionnaire Matthew Gayhart used when interviewing me on Ketamine infusion therapy for his research paper; March 2015.

I hope you find it helpful.

How long have you been suffering from depression?

I was diagnosed with Clinical Depression, which is also called Major Depressive Disorder, at the age of 18.  However, I feel that I have suffered all of my life, being aware of it at the age of 8.  I was also diagnosed with generalized anxiety disorder at that time.

Approximately how many different treatments have you undergone?

I first started doing talk therapy at the age of 18.  I knew something wasn’t right with me.  My depression has led me to having to go into hospitals for psychiatric care; both inpatient and outpatient care, more than a dozen times, over the course of 20 years.  Doctors have tried a combination of 3 or 4 psychiatric medications mixtures to lift or alter my depressed state and lower anxiety levels.  It was probably in excess of 2 dozen or more combinations, or “Cocktails”  as it is often referred to.  I also received 12 ECT treatments over a three month period, about 15 years ago.  I can regretfully conclude that none of those treatments have ever worked.

How does Ketamine compare to these previous treatments?

Well, (laughs), the first thing is, the Ketamine doesn’t take 4-6 weeks to figure out if it will work.  That can not be said about traditional antidepressants.  I would know right away if the Ketamine was going to work or not, and I did, within an hour.  The anxiety I could never escape was lowered within an hour.  I was alert and felt calm for the first time in my life.  It was fast acting.  My results were very obvious.  Clearly I can’t hide the fact that I feel better. You can hear it in my voice.

Do you think that it is worth the money it cost for Ketamine Infusions?

I do!  If I were to add up and report all the costs I have accumulated over the years on all the medications, hospitalizations, ECT, Cognitive Behavioral Therapy, outpatient treatment programs you would be surprised at how the numbers and debt pile up over the years.  My balance with insurance coverage was a constant financial stress. What I mean is that just the co-pays have put a strain on my family.  It was even more painful because none of the treatments worked.  They just added another layer of depression and many of them just made me a zombie. I wish I could have that money back to invest in my future Ketamine infusions.

How much does a Ketamine infusion cost?

For me, it was $450 dollars per treatment. Insurance companies do not cover any of the charges. Ketamine for depression is considered off label use and is not covered. It makes trying this experimental method unrealistic for many.  I was fortunate to have our tax return issued.  It was so unbearable fighting to survive during the three weeks between filing and my first appointment.  The cost made it impossible to try Ketamine as soon as my husband discovered it.  This needs to change.  It must change.  One day (laughs)  I will probably be advocating for this treatment.  I can express how different I feel.

I do want to add an updated comment about the costs of Ketamine Infusions.  I am aware that average pricing ranges between 400-700 dollars per treatment nationwide. However, I know of a few places, like The Injection & Infusion Clinic of ABQ that offer low cost Ketamine infusions that start at $259. I recommend doing your research.  Added: 7/15/17

Are there any adverse or negative effects?

None.  For me, during the treatment I experienced the effects of Ketamine, but once you have the treatment and it is over you no longer have to worry about traditional lingering issues such as weight gain, liver issues, diabetes. mood swings, suicidal thinking, anxiety, internal discomforts, insomnia, and the list goes on and on.  With Ketamine therapy I have had nothing to negative to report. When you leave those “usual” sensations brought on by the Ketamine are gone.  They have found no evidence that you will have any medical side effects.  I can agree and say that after 3 treatments I have not experienced any of the effects seen with other treatments.

I will add another note on 7-15-17 that after over 2.5 years I have yet to discover any negative or adverse reactions. My only complaint is that I have been known on occasion to vomit during my intramuscular Ketamine treatments, but a small price for 8-10 days being symptom free.  It is unpredictable and doesn’t occur during every session.  I can’t remember the last time I vomited during my Ketamine treatment.   You can take an anti-nausea medication to combat this but I tend to be a purist and strive minimize what I put in my body.

Ketamine is known to be a psychedelic drug, so what have your experiences been with this side of the drug?

When I met Dr. Levine, he shared that he likes to tell his patients what Ketamine is like using the analogy of playing Family Feud.  The top five answers on the board of what Ketamine is like are: Strange, odd, weird, intense, dreamlike.  I would also have to say it was a very introspective time, spiritually awakening, with out of body sensations; like you literally feel like you come out of your body.

I remember saying to your dad (who was in the room for support)  ‘I don’t know where my body is’.  I couldn’t see my entire body.  I could see and say,  ‘Here are my shoulders, but I don’t know where the rest of my body is.’  It was strangest thing, but I was not upset or afraid.  I was more curious. Calm.  Warm.  While I was investigating this feeling, I remember my whole face lit up when I saw my feet.  You feel, or I felt, disconnected from your body. It is as though you come out of your body and you are able to wander around the room without moving an inch physically.

It is like lucid dreaming.  It is like dreaming, but you are awake.  It is like you are in a dream and all of this bizarre shit is happening while you are consciously aware of your thoughts. In this type of dream you are the observer of all around you as well as what is deep in the subconscious.

You are experiencing the world in the third person.  It is like you are a separate entity.  It feels very spiritual.  I wasn’t as critical of myself.  I was able to just look at myself and have thoughts about everything and anything without feeling overwhelmed by my own thoughts and feelings.  It is like you are a different person and you are watching your thoughts and reactions.  It is very profound.

You have, or at least I did, this insight into yourself from a third party point of view. These thoughts are much deeper thoughts than the common superficial levels we communicate. The thoughts are so fast and it is fleeting.  It is like a water cascading over you and you have to flow with it, but you just keep going with the thoughts.  Easy.  No judgments.  What a relief.

I could also look at the wood on a door to my room and see the shapes and textures of the wood.  I would look at them and give them a story in my mind that made the door appear to come to life.  It was as though I was giving the door life.  The Ketamine allows you to look at the different things around you with a fresh clarity.  I personally didn’t see horrible demons or anything.  I didn’t see things appear before me that were not already there when I walked into the room.  It was more like my mind was just enhancing the surroundings in a superhuman way.

Were the Ketamine Infusions enjoyable?

Yes, most of the time.  Ketamine, it can bring out things inside of you, deep childhood issues and spiritual epiphanies too.  I wasn’t ready for the new information and feelings; maybe.  I cried in 2 of the treatments,   It was bizarre because I almost felt like I was Buddha on a mountain with my insights.  (laughs)  It can feel a bit intense at times.  Dr. Levine reassured me that crying is natural when you have years of stored unexamined emotions.  I didn’t understand why I was crying.  That was unsettling. How could I feel relief and still want to cry?  I understand now that having an emotional release after years of pent up dark feelings can feel so great it brings you to tears.

How long after the infusion starts do you feel the effects of Ketamine?

I really paid attention to the time.  I was obsessed.  I frequently would ask what time it was. I would ask repeatedly in every session. I wanted to reduce my anxiety level and made mental notes during each session.  I also made it a habit to state my observations out loud to my husband so he was pretty aware of my thoughts and feelings during each infusion. I determined that the onset of the effects of Ketamine after IV starts administering it was right around 7 minutes or so,

Could you describe what it feels like to get a Ketamine Infusion?

It felt like I took a couple shots of Tequila. I got all warm inside, giddy, and relaxed.   I would then feel many of the dissociative effects I have already mentioned.  I did get that “trippy” feeling during several of my treatments but not every single one.  The sessions were all different.  I can only figure that once the IV needle was in place and the Ketamine entered my system, I was calm.  It was shortly after that intoxicated feeling began that I was able to see the textures in the walls and doors; 14 minutes or so.  The colors and paints appeared puffed up; like I was viewing the world like a 3D movie.  It was not like the hallucinations or color trails associated with LSD and mushrooms.  I feel that these drugs change the world outside of you; like the walls are moving and you are seeing things melting.  I feel most psychedelic drugs could cause you to believe you are seeing the devil or any objects that are not present or reality.  I feel with Ketamine it seems more internal to me; like there are things going on inside of your mind causing the things around you to look the same but enhanced. It just feels differently.  It is very dream like.  I remember there was a box of tissues in my room and it had a magnolia blossom design on it.  The flower was gorgeous during my infusion.  I could see the petals in detail and colors so rich it soothed me instantly.  In fact, I made sure that tissue box was always present in my treatment room.

Are there any drawbacks to this treatment compared to any treatments you have had in the past?

I think that the major drawback for me is that you never really know what is going to happen during that hour you are being administered Ketamine, even though it is the same type of treatment every time, it has proven to me that it is never going to be the same; the treatments I have had have been very different each time.  They definitely follow a well defined path, but they have been so completely different.  The only similarity is when things start and when they will end.  There may be times when you will not be able to talk to due to the mind activity.

When I asked Dr. Levine if I could have someone in the room he did warn me that I might not be capable of talking to my husband.  This was new.  To be honest,  I didn’t believe Dr. Levine.  I was chatting away to my partner about what I was feeling without incident.  I don’t know how it happened but suddenly I was pulled into thoughts I wanted to follow.  Insights. I mentally raced to catch up so I wouldn’t miss anything.  I was unable to talk to my husband.  I glanced blindly at him.  I wasn’t able to see him through my thoughts visually shaping before me.  I was running circles in my mind trying to absorb this gift.  A gift.  That is how I feel about Ketamine.   All my chasing made it difficult to talk.  I could hear Dr. Levine’s words in my head saying if it starts to feel overwhelming, just close your eyes.  It will help.  And it does.  All of a sudden, I said to the room, ‘I am not going to be able to talk anymore.’  I wasn’t afraid.  I was intrigued.  In the end, all of the effects you feel from the Ketamine Infusion are done by the time you leave.  I feel like there are no lasting adverse effects from my treatments; just the helpful benefits Ketamine provides for me.

Do you agree with the fact that Ketamine is not an FDA approved treatment for depression?

No.  I don’t agree.  I think that it is an injustice for those suffering like I am.  I hope to one day be healthy enough to be a Ketamine Advocate.  Education is critical.  I think that may end up being my purpose. I am going to spread the word. Ketamine is hope.

I am going to add a comment here because I feel it is warranted.  When I return from New Jersey following my 6 infusions, I had moments of being symptom free for the first time ever.  It was incredible for me.  I have never responded to medications.  My enthusiasm was pouring out of me then and it remains strong to this day.  I did not edit this response.  I promise.  In fact I even told Dr. Levine on my last day of treatment with him that I was predicting that I would one day advocate for this hidden jewel.  

How would you have rated your depression on a scale of 1-10; ten being most depressed, and actively suicidal, prior to treatment?

Definitely a 10,  I was actively suicidal, with a plan in place if I didn’t respond to the Ketamine treatments.  That was on the morning of my first Ketamine Infusion,

And today, how would you rate yourself on that same scale?  I understand that it is the mid-point in the treatment. That means you have had 3 infusions this week? 

I would say I am around a 4.  I go back again Monday, Wednesday, and Friday of next week for the remaining 3 infusions that were recommended.

What led you to pursue Ketamine over another cocktail of medication, or another round of ECT?

I cringe at the thought of ever doing ECT again.  I would never allow doctors to do ECT again because it erases big chunks of your memory.  I had 12 treatments.  I was hospitalized for three months during my ECT.  I have absolutely no memory of my stay.  I have flashbacks sometimes.  I know when I went into the hospital after yet another suicide attempt, doctors started discussing ECT and had me watch video’s to educate myself.  I was desperate, so I agreed to ECT against family’s wishes.  I have no recollection of anything that occurred during that three months’ time.  What hurts the most is the fact that ECT did not help me.  The same results with other psychiatric drugs used to treat my depression and anxiety:  Failure.  There have been many antidepressants I have been asked to try.  There has not been one single drug that has worked,  I wanted to give up.  What could ever make me think that another cocktail would ever work?   My psychiatrist has been through every group of antidepressants trying to target different neurotransmitters in the brain, I have been on MAOI, SSRI, tricyclics, etc. with no relief but plenty of new health concerns to address.  Why should I have any hope?  Why should I deal with the negative side effects. I know the outcome will be the same.  History has proven this to me.  You can only live in the darkness for so long, you know? I was hanging on my last thread,  When my husband and therapist looked up treatment resistant depression, and they found Ketamine as an option, and they seemed to think that this drug was something different.  I wasn’t convinced.  They told me of the success rate and they were so positive.  I thought it was almost too good to be true. My family, you included, Matthew, thought it was worth looking into and so we started to do just that.

In closing, now that you have had the 6 Ketamine Infusions with positive results what now? Will you continue to be symptom free without anymore treatments?

While I was in New Jersey for treatment, Dr. Levine mentioned a doctor that reached out to him interested in administering Intramuscular Ketamine.  Intramuscular means it is basically a shot of the proper dosage of Ketamine into a large muscle such as the thigh or shoulder. It was unbelievable, and such a blessing, when Dr. Levine mentioned Dr. Moseley lived in Virginia and gave me his number.  His office is only an hour away for where we live. I will give him a call on Monday morning and hope he is willing to work with me.  I responded to the Ketamine in a very positive manner.  The problem for me is, the time I am symptom free is temporary.  I am hopeful that if I continue to get Ketamine administered at a price I can afford, then I will be on the right path in my recovery.  I, too, may one day have a success story.  My own happy ending.

If you know of anyone suffering with treatment resistant depression, like I do, let them know that Ketamine therapy may be an option worth looking into.  It has been and continues to offer me relief from my symptoms.  If you or someone you know are considering Ketamine infusion therapy, please visit www.infusionclinicabq.com for low cost ketamine infusion and injection options.

Join me again later in the month when I address questions about the differences between Ketamine Infusions and Intramuscular Ketamine.  I also have experience using a prescription nasal Ketamine spray to help me with the time in between shots. I will share my thoughts about the different delivery methods and concerns over what I have been reading in my studies. I will also be answering more questions about Ketamine that many of you have asked me through email or phone calls. Thank you for reaching out.

This article was originally posted on The Injection & Infusion Clinic of ABQ

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