SPRAVATO (Esketamine) week 1

Last week was my first week receiving SPRAVATO (Esketamine) treatments. I received my first treatment on Tuesday March 10th. I’m sorry I didn’t post about it sooner, it was a bit of a crazy week, as you will soon discover.

I had to fast for 2 hours and not drink anything for 30 mins before the appointment to minimize nausea and vomiting. I also took phenergan. We started out to the appointment with plenty of time to get there, we now live over 30 mins away from the office, traffic was okay then Stuart said, “I’m going to the wrong place.” He had driven to my therapist office instead of my psychiatrist office. I instantly got very anxious. I hate to be late and I was already nervous about this appointment. I’m still not very sure about where things are in this town, I think it makes it more difficult to get to know these things when you don’t drive, so I didn’t realize that we really weren’t that far from our desired destination. We arrived right on time, but by the time we got there I was pretty agitated.

First I was told that the normal person who does this was out and a substitute was taking her place, she would be back next time. I was then asked if I’d like to be in a room with a recliner or a couch, I said a recliner. Then I tried the recliner and it rocked, it moved even when it was reclined. I decided that was a very bad idea if this stuff might make you have vertigo you sure don’t want to be in a chair that moves. So we moved to the room with the couch. We talked about how the drug was to be administered. It’s a nasal spray, it comes in devices that contain 28 mg each, depending on the dose you are to receive is how many devices you use, to be self administered under supervision 5 minutes apart. From what I read you normally start at 56 mg (2 devices) and depending on how that works, you work up to 3 (84 mg). I was surprised when I was to start out at 3. Then she took my blood pressure and it was WAY too high so we had to wait 20 minutes to see if it would come down. Every time I go to that office my blood pressure it high, I don’t know what it is about that place. Maybe it’s the ride over there, my nervousness…?? Anyway, I had them dim the lights, I laid on the floor (it’s a nice, clean room with a nice rug) and I meditated. She came back and actually got on the floor with me and took my blood pressure again and it was down enough to start.

I had to tilt my head back and insert the device in one nostril while holding the other closed, push the plunger and sniff. Then do the other side. Easy peasy. I didn’t feel much, but by the time the 5 minutes were up and I was ready to take the 2nd dose I could feel it a little. I repeated the same administration and WHOOSH! Oh boy I felt that one! I suddenly felt very panicky, a bit paranoid and did not like it at all. Then I realized it was because I was fighting it. So I relaxed and just let it go, and I started to feel just fine. I felt tipsy kinda, but more high. By the time we were ready for the third dose I was giggly and had a hard time leaning my head back for it, but I got it done, and oh what a trip it was. I was told I was quite entertaining. I did not loose time, and I knew where I was the whole time. I did get to where I couldn’t understand what people were saying for a while, and Stuart had 2 heads and a third eye, but it didn’t freak me out. I laughed a lot and got very interested in the smallest things, like the top of my water bottle and the tip of my nose. I said some pretty funny things, that I probably shouldn’t repeat here, but one time I did tell everyone I loved them. As it started to slow down it was just fun, actually most of it was just fun. Something I haven’t felt in a long time. I just curled up on the couch with Stuart and laughed and joked and waited for things to get to where I could go home. The trippy experience lasted about an hour. I had to stay there for two hours from the time of my first sniff, as long as my blood pressure wasn’t too high, the treatment can make your blood pressure rise for 4 hours after. She took it and she couldn’t hear it. She waited and tried again, she finally got it and it was 90/70 so my blood pressure went way down instead of up. hahaha

So that was my first treatment. I won’t go into as much detail about the next one, there are just some more things to know about the rest of the week.

After the treatment I walked outside and started sneezing, I’m pretty sure it was because there was a big bush outside that has just started to bloom, lots of things are blooming here suddenly. I sneezed and sneezed that night until I took Benedryl. I woke the next morning with a bad migraine and vertigo. It was very cloudy and a bit rainy, so I thought it was that. I had to use my walker. The vertigo got worse. If I kept my head straight it was okay, but if I moved, rapid spins! The next morning I couldn’t lift my head without severe vertigo. There was no way I could go in to have my second treatment. I finally figured out it was BPPV (Benign paroxysmal positional vertigo). I’ve had this before a few times, but it’s been a while. The last time my doctor showed Stuart how to do the Epley manuver so he could fix it, and he did, but I had to be upright for 48 hours and it takes a while for you to feel steady enough to move around. Luckily the office was able to change things around and I was able to have my second treatment on Friday.

I got to the appointment and the regular person who oversees this was there. I had a massive migraine, so no surprise my blood pressure was high again. Once again I meditated for 20 minutes and got it down enough to do the treatment. I’m really not liking that. I have normal to low BP everywhere else. That is starting to concern me. But the main thing you need to know from this appointment is that she said I should have started off with 2 doses. So I only got 2 on Friday. It was nothing like Tuesday. She said I must have a higher tolerance. She was surprised at how I could have a coherent conversation. I felt really high, like I had a lot of marijuana, but I didn’t feel like I was tripping. Nothing looked strange, I didn’t feel different (when I had my first treatment my sense of touch was different). So for my next treatment we go back up to 3. When I first got the treatment my migraine vanished, it was bliss because I went in there at an 8+, unfortunately when it ended the pain started to return and ended up right back where it started. I really am hopeful that as this treatment continues I’ll have more lasting results.

I saw my therapist later in the day on Friday and she said I looked brighter. I was still pretty “happy”. We had such a nice visit, we just talked and talked, it was like girl friends laughing. I know it was because I had just had my treatment that day, but that was fun. You don’t normally have that kind of day with your therapist. Hahaha!

Any questions please feel free to ask me anything!

If you don’t feel comfortable asking in the comments, you can send me a private message by clicking on the About Me – Contact Me tab at the top of the page, I’m happy to answer anything I can. If you message me, be aware sometimes I don’t check my email every day, so it might take me a couple of days to get back to you.

Esketamine has finally been approved by my insurance

https://www.spravato.com/

I found out last week the ketamine (really esketamine, um SPRAVATO) has finally been approved by my insurance, and it has taken this long for me to wrap it around my brain so I could write about it.

My doctor keeps saying I’m getting ketamine, but really I’m getting SPRAVATO, which is esketamine. Ketamine is not FDA approved for treatment resistant depression (TRD), it has been used for it off label for quite some time now with very good results but it is very unlikely they will ever approve it for anything other than an anesthetic because it cannot be monetized. That’s where esketamine comes in. “Esketamine is a molecule taken from ketamine’s racemic mixture (basically two mirror image molecules which spin in different directions).   As it is an altered form of ketamine, esketamine could be newly patented.  As a result, corporate dollars were invested in clinical trials that led to the current FDA indicated use of nasal esketamine for TRD.” (Nasal Esketamine vs IV Ketamine) IV Ketamine has been used to treat TRD since 2010 and has a 70-80% success rate, esketamine is also showing to be very effective which makes sense since it is a molecular part of ketamine, but it has only been in use in clincal settings for a year so I don’t feel like we really know long term results yet.

I start my first treatment on Tuesday, March 10th at 2pm. I have to be enrolled in a restricted program called SPRAVATO Risk Evaluation and Mitigation Strategy (REMS) Program. It can only be administered in a healthcare setting certified in the SPRAVATO REMS Program to patients enrolled in the program. I go in and under supervision I give myself the nasal spray. Then I stay there in a quiet room, with Stuart, (there is no way he would let me do this without him being there) and I’ll be observed for 2-3 hours. You shouldn’t drive or operate machinery until the next day. For the first month I have to go in twice a week for a treatment, the second month is once a week, then it goes to every other week….eventually it goes to once a month and that’s the maintenance dose. That’s all depending on how well I do on it. I could go through the dosing faster, or I could not do well on it at all, but that is the normal regimen. I can tell you that I have been struggling with this schedule. The fact that Stuart has to leave work so much so that I can go in just to get this medication, ugh, this is awful. I’m trying really hard not to feel guilty, but it sure it hard. His boss hasn’t made this easier.

Most of the side effects of SPRAVATO are short lived but they can be pretty intense.

  • Dissociation (was reported 2 ways in clinical studies through adverse event reports, 41% of patients, and by using standardized scale, 61% – 75% of patients.)
  • Dizziness (29%)
  • Nausea (28%)
  • Sedation (was reported 2 ways in clinical studies through adverse event reports, 23% of patients, and by using standardized scale, 49% – 61% of patients.)
  • Spinning sensation (23%)
  • Reduced sense of touch and sensation (18%)
  • Anxiety (13%)
  • Lack of energy (11%)
  • Increased blood pressure (10%)
  • Vomiting (9%)
  • Feeling drunk (5%)

It can also cause abuse and misuse. (I don’t really know how since you can only get it in a clinical setting. How can you misuse a drug that you can’t take home?) It can cause an increased risk of suicidal thoughts and behaviors. (Why does it say this on every anti-depressant? Isn’t this what they are supposed to stop? hmmm. Or is this different?…scratching my head on this one) Temporary increased blood pressure that may last about 4 hours after a dose (could this be because people have been spinning and dissociating, and having increased anxiety?? I’m pretty sure my blood pressure is going to be a bit high before we even start.) Problems thinking clearly (not sure I’ll notice a difference on this one) or it could cause bladder problems, such as a frequent or urgent need to urinate, pain when urinating, or urinating frequently at night. (well that could be inconvenient). **all of the information about SPRAVATO came from literature provided by SPRAVATO.

Now you can probably see why it has taken me a while to wrap my head around this. The fear of having a vertigo attack has been real, and the thoughts of dissociation is a little scary, but I’ve been meditating and trying hard to simply stay in the moment and not get too ahead of myself, if I keep on thinking I’m going to get vertigo that’s a sure way to make that come true. I’m going to try hard to go in there with no expectations, simply aware of what may happen and having good thoughts about how this may help.

This is not only for my resistant depression, it is also going to hopefully help my migraines. It has been shown to help, reduce migraines, so I really am going in this optimistically.

Decisions

Image by Jan Alexander from Pixabay

It seems like I often stay away from here more than I intend to. I will come here and sit and think of a hundred things to write and feel like none of them are worth actually putting into words. I have some ideas for posts I want to write about that I think are interesting, but I just can’t get those out right now. Things just aren’t settled enough in me to get the words out right, I’m too self absorbed, I guess, to sit down and write about anything intellectual. So for now, if you will hang in there with me, you are going to hear more about me.

I made a huge decision this weekend, I’m backing off on some treatments. Yep, you heard right, I’m so tired of it all I’m taking a break. This is simply taking way too much out of me. More importantly, it’s taking way too much out of Stuart. He isn’t complaining, but I see it. I have at least 1 appointment a week, normally 2, often more. He has to leave work early at least one of those days. If I have an appointment at the pain management doctor he has to take half a day off because it’s an hour away. He also has to do most of the dishes, the laundry….he’s really an amazing man. Luckily we found a housekeeper and she will be coming in starting next Monday once a month to do the major cleaning. We still haven’t finished getting all our moving in stuff straight and we have been here 2 months. I simply cannot do it. We are both so overwhelmed it’s crazy. He’s being made to feel like he’s having to choose between me and work. That’s going to make him hate his job real quick, he’s already talking about looking for another one. I’m freaking out about that. He has to feel better about things. I have to take some of this off of him and the only way I can do that is to remove some of the responsibility from him. Getting rides to doctor’s appointments is not a solution. I cannot hear well enough in the appointment to handle it alone, he has to be there to help me answer questions, and to help me understand what the doctor says. He also needs to be there in case I crash. I often have vertigo attacks due to the stress that comes with these appointments, I would need someone there knows how to deal with that.

I’ve canceled all the pain management appointments, I’ll consider going to another clinic if I can find one closer to us that has appointments at times that won’t take Stuart away from work so much. I do admit I’m having more migraines this month since the occipital block wore off, but it’s not worth the stress of going an hour in one direction to their office. It’s a hard trip, and I don’t really like the doctor. I see my psychiatrist next week, we are normally able to get a late afternoon appointment with her, so Stuart doesn’t miss work, but if I get approved for the Ketamine I’m not sure if I’d have to go in earlier, so that would have to be part of that decision now. I’m changing my primary care physician to a doctor that is very close to me, so I it will be very easy to get there. I don’t think I need to go to a kidney doctor any more, so I’m canceling that. I will keep seeing my migraine doctor, I don’t see her but every 3 months, so it’s not that bad. And if Stuart can’t go, my neighbor said she would take me. I know I can hear her, and I think she will listen to me. A lot of doctors don’t listen without Stuart backing me up, there is definitely a prejudice against women in the medical industry, we have really noticed a marked difference in how doctors treat me when I’m alone and how they treat me when Stuart is there to back up what I’m saying.

There has just been so much going on and I just can’t see where there has been that much improvement. Yes, I do see some improvement, but when you are doing so many things how can you know which one is the one working? I started the Aimovig 4 months ago, they say it takes about 3 months before you can judge if it’s working, well that was the same month I got the occipital block, so I don’t know if the shot or the block was the one working. I think it’s a wise idea to find out which one is helping before I keep spending money on both. I’m also not fond of the idea of continually putting steroids into my body after having avascular necrosis. They told me that it was most likely caused by steroid use and that it’s possible to get it in other joints; I don’t want any other bones to die, having one hip replacement is enough. However, if the occipital block is the one that worked then they can cauterize the nerve and that could last a couple of years. But they want to do an occipital block on the other side first and then they plan on doing injections in my back to help the muscles that won’t stop firing….that’s a lot of steroid injections. I think seeing another pain specialist to get another opinion might be a good idea anyway. I think my back might need some myofascial release. I found a pain clinic that does that kind of thing too, they are only 30 mins away, well at least I’m getting closer…sigh. First I’m taking at least a month off from that kind of stuff. Next I’m going through my medications and deciding which meds I know are working and which ones I’m taking because I think they may be doing something and I’ve been afraid to stop just in case. I’m tired of taking things that I’m not positive are helping. Lots of decisions to be made.

I do have some exciting things I’ve been doing and coming up, including a chronic pain group I’ve been attending and a migraine retreat I’m going to in April, I’ll write about those soon, I promise, but this is getting long. So I’m going to close and get this posted before I decide it isn’t worth posting and scrap it.

Have any of you decided to just take a break from some treatments? I’d love to hear your experience.

Why Am I So Sad?

*Warning, this post may be a trigger for some people. It mentions major depression and passive suicide ideation.

self

I’m sitting here with a severe migraine and I’m certain that’s why I simply want to die, but why do I feel that way so much on other days? Let’s face it, my life is going better than it has in a long time. Yes, I’m having a really bad migraine right now, it isn’t as bad as it was last night or I wouldn’t be able to type this, but it’s still pretty dang severe. However, my migraines are much better overall. I’ve had 5 migraine free days this month! That’s enough for me to be dancing in the streets! I haven’t had a month with 5 migraine free days in….Oh, I don’t know how long! I have a house of my dreams, an amazing husband, wonderful neighbors….So why am I so sad? Why do I sit here and question if I should actually exist? How can life be so much better, and yet I feel so bad so much of the time? I have this urge to just run and run and run. I have this compulsion to pack a bag and leave. Where would I go? Why do I think that would make anything better? In reality I know it wouldn’t, after all, I’m trying to get away from myself and no matter where I go, there I am. I simply do not want to exist.

So these are these are the things I asked my psychiatrist last week, why am I still so sad? Why do I feel no better when everything in my life is going so well? She said, “It’s not what’s on the outside that’s bothering you, it’s your brain chemistry that’s out of balance.” Yeah, I knew this, really I did, but I’ve never had it this bad with everything going so well, and that’s a bit too simplistic for me. So I came home and started reading, I wanted to know more about this “brain chemistry” of mine. I found this article in Harvard Health that explains things really well in language I understood, and I thought some of you might find it really interesting too. What Causes Depression? Onset of depression more complex than a brain chemical imbalance.

More about me….We are still working on getting the ketamine approved. It seems as if it might actually be happening soon, or at least we will be getting a definite yes, or no from the insurance company, instead of this extremely long hold up that both me and my doctor are extremely frustrated over. If they come back with a “No”, I don’t know what the next step will be.

I’m doing everything I’m supposed to to try to be better. I’m eating well (most of the time), writing a gratitude journal every night, writing affirmations every morning, I’m trying to move more, I’m meeting new people, making friends…..All of this is very hard for me. I’m pushing myself beyond all my comfort zones and I’m still doing it, I’m trying so very hard to get better. At least when I’m focusing on those things I don’t have time to think about other things, but then I have days like today when all I can do is sit here because it hurts so bad and I think, “what’s the point?” I was supposed to go to coffee with my neighbors this morning, and I had to get Stuart to cancel for me because I couldn’t lift my head off the pillow it hurt so much. That’s a great way to make an impression, huh? I’m so tired. I’m just so tired of trying so hard, it just shouldn’t be so hard.

I know it isn’t always this hard.

I know it can get better.

I know it will get better.

I KNOW I WILL GET BETTER.

“Sometimes even to live is an act of courage.” ~Seneca

Ketamine and Esketamine — Repost from Experiments in Happiness

In the upcoming weeks, as soon as my insurance approves it, I will be receiving Spravato (esketamine nasal spray) for depression. I wanted to put together a post explaining what it is all about it, then I found this post and thought I couldn’t possibly do a better job. So I hope you don’t mind if I share this with you. Please note that this covers all forms of ketamine, if you want to just read the “How Effective Is It” statistics surrounding what I will be receiving read sections 3 and 4. I got so much information from tbe post started to not even watch the video attached to it, but then I noticed that it is captioned so I went ahead and watched it and it is very interesting. It does get a little in depth in the science part of things, so if you are interested in that kind of thing, it’s worth it, but if that bores you, you might want to skip it.

Do you have any experience with ketamine? Know anyone who has? Do you have or know anyone who has, medication resistant depression? Or like me, the meds stopped working or there are just way too many bad side effects? I’d love to know other’s experiences.

Ketamine and Esketamine

Drug Class: NMDA Antagonist

How it works: Blocks a channel for a chemical in the brain called NMDA. This, in turn, increases the effects of another channel for a chemical called AMPA. This leads to increased effects of BDNF and mTOR. The increased effects of BDNF and mTOR helps the brain to rapidly form new […] Ketamine and Esketamine — Experiments in Happiness

I don’t want to talk about it.

Image by TPHeinz from Pixabay

I have found myself dreading coming to my blog. I don’t want to talk about me, but I have always kept this blog open and honest and I don’t want to stop that. As I look back at the many years I’ve been writing here, I’ve been up and down and up and down and up and down….have I really made any progress? How do we measure progress? I think that’s the real question, and not one I’m going to answer today.

I have a lot going on right now and I simply don’t feel like talking. Ummm, that may not be true, I just don’t want to feel worse when I do. I’ve reached out and been ignored…not sure what happened there. I spilled my guts to someone who told me I could always talk to them, when I finished they said, “WOW. You have a lot going on. Praying you get some relief very soon. Love you bunches.” and that was the end of the conversation. I cried for most of the day after that. That is what happens when you try to talk to someone who does not have chronic or mental illness. She may love me, but she has no clue. And it makes me VERY wary to talk to anyone unless they are my peeps. But I don’t have many peeps and I don’t want to wear out the few I have. I do have a very good friend who hears almost everything and she is amazing, but she has her own crap going on and I can’t just keep unloading on her all the time. Of course, Stuart’s here, and he has never made me feel like I can’t talk to him, or made me feel bad about how I feel, but he needs to get away from it sometimes and he thankfully he doesn’t have a chronic illness. Support groups do not work for me, those people get on my nerves. I have a therapist, but let’s face it, one hour a week is not always enough, and sometimes you don’t get that. (like when I’m so sick I can’t go, and soon she’s going to Thailand for 3 weeks…Ahhh! I am happy for her, she’s never done anything like this before. What a dream trip.) Oh, dang I’ve completely lost my train of thought. So anyway…I don’t want to talk, or maybe I don’t trust talking, I don’t think it’s doing much good, and I feel like I’m losing the few friends I have because of it. I have some new treatments coming up and as that happens I’ll post about them. I would love to know more about other people’s experiences with these treatments, so I’ll be sure to post mine. (I just started Aimovig for my migraines, I’m going to be trying ketamine (esketamine nasal spray) as soon as my insurance approves it for my depression, and I’m going to be going to a pain clinic for my neck pain caused by my migraines…or the neck pain contributing to my migraines…anyway…pain.) So there will be posts.

I’ve decided to try to start putting out more posts, but they will be posts that are about my chronic illnesses and not so much about just me. I will probably put in there how it relates to me personally. But I have soooo much going on right now there may not be a lot of posts coming out, but I’m going to give it the old college try. (where did that saying come from?)

Well, that’s what’s on my mind today. Plus a whole heck of a lot more, but most of that is a mess!

Before I go, I’d like for all of you to know that if you ever need someone to talk to I’ll listen. Well, not with my ears, but I’ll text, message, email…. There is a contact form right here on my blog just go up to the top and you’ll see the “About Me /Contact Me” tab…you can contact me right there and it will email me. Now, if you are someone who wants me to sell something on my blog, or do some strange post, or something like that…don’t waste your time. I’m really not into those things. But if you need a to talk, I’m here for you.