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 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.
After my last post about shame I didn’t mean to be away so long. That post caused a lot of reactions, some people seemed to understand my feelings of shame, others got very worried about me. First I want to apologize for not answering every comment, I have been going through an awful time with my migraines and simply haven’t been able to look at the computer much, and I will admit it has put me in a depressed funk, I’m so sorry if I worried anyone. The shame I feel is not overwhelming, I know I made it seem that way in the post, but I promise it’s not all consuming. It is not uncommon for people who have chronic pain or illness to have feelings of shame mixed in with feelings of guilt, I wanted people to know if they do, they aren’t alone. And I wanted people to know, I’d been feeling it and didn’t even realize that’s what it was. Now that I realize it, it’s easier to notice it, and to fight it. I understand that I have no reason to feel ashamed, I also understand that I have no reason to feel guilty, but those feelings still come. They are less now, but they still come.
Something happened this past week that I’d like to share. I’ve needed to cancel plans with our realtor a couple of times because of my migraines, and when we saw him he said, “Hi sickie! Feeling better?” At first I felt shame, then I was angry, very angry, and I stayed angry for days. I told Stuart if he wasn’t our landlord and a good friend of Stuart’s father he would no longer be our realtor. Then I decided he needed to be educated that this is not an acceptable thing to say to a person with chronic illness, or anyone for that matter. I was going to say something to him, but my advocate of a husband beat me to it. Stuart said that he was very apologetic and said that he doesn’t know why he said such a thing, it’s not something he would normally say. He doesn’t know that I know Stuart talked to him, and he hasn’t said anything to me. I’m simply proud that I didn’t just sit back and accept being shamed. This happens to us way too often and we mostly just shrug it off, I think we need to speak up more often and educate people as to how we should be treated. This is one way I will fight my feelings of shame.
Now, a really quick update. Since July 26th, my last visit to my migraine doctor, I’ve had 2 migraine free days, 2 days with moderate migraine pain (5-7), and every other day I had severe migraine pain (8-10), along with many other symptoms, such as nausea, light sensitivity, vertigo… None of my medications were working at all. My doctor prescribed Migranal, but it took until September 4th before I finally got it (stupid insurance hoops you have to jump through) and I can only use it 8 days a month. It’s been difficult. Our 15th wedding anniversary was September 3rd, we wanted to do something special, but instead I basically missed it. Good thing it’s the marriage that counts, and it’s a celebration every day. (HA…how hokey was that?!? It really is special though.)
I saw my migraine doctor yesterday. After my last appointment I had a CTA scan, that’s a CT scan that shows your arteries, it came back normal. I had just started Effexor to try to help my migraines, and I stayed on Emgality for prevention until we saw if Effexor worked. Well, Effexor didn’t work, so we are changing the Emgality to Amovig. You have probably seen the commercials for both of these drugs. They are similar, but a little different in how they work, so hopefully Amovig will be a better fit for me. It can take up to 3 months, to tell if it’s going to work at all. So I’ll know in December. She thinks this last 6 weeks could have been so much worse because of monsoon season. She said it has been worse than last year. I know I was affected last year, but I know I wasn’t this bad.
If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.
One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.
Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.
I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?
To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.
I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.
When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:
To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.
This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.
I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!
Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.
In just 8 days since I started writing these journal posts I’ve made some observations. The antidepressant is working, and I’m very glad I took the chance and tried it. I’m in a much better place mentally. On the other hand, I do not see a great improvement from the Emgality, I hope I’m wrong, but as of right now my migraines aren’t better and I’m having an increase in vestibular migraines. Finally, I can see that I get a lot more done than I thought I did, and by paying attention to what I’m doing encourages me to do even more. I may not continue to write these journal entries publicly, (let’s face it, who really wants to read my day to day activites?) but I think I will continue to keep a private journal, I can really see how useful it can be.
More thoughts about my migrainesI’ve noticed over the past month or so I wake up with relatively no pain, this has changed since starting Emgality, I used to wake up with a migraine almost every day; however, within a couple of hours a migraine will normally start. There were a few days last month that this didn’t happen, but for the most part, I could set my watch to it. This past week I’ve had 3 vestibular migraines, (a vestibular migraine causes dizziness and vertigo with or without pain) each one has been accompanied with severe pain and confusion. These are not new, but they do seem to be coming more often, and are more intense. Things to talk about with my doctor.
Yesterday I finally spent some time outside. I have 3 types of exercises from my new therapist, breathing, hip stability, and functional. While I was outside I laid down by the pool and focused on my breathing exercises. It was so nice, I finally felt things said I should feel! Exciting! I got all of my exercises done, not all at once, but I got them all done. So, I didn’t get a whole heck of a lot done yesterday, but I accomplished exactly what I wanted to, I went outside, and I did my exercises. The rest of the day I didn’t feel well and didn’t feel like doing much of anything, then right before I fell asleep I had a migraine hit that was excruciating. I thought a cluster was starting it was so intense, but it didn’t quite hit that magnitude. However, the pain was behind my eye and in my temple, my eye watered and right nostril ran, just like when I have a cluster. I had to move because the pain was so intense. So, I’m not positive it was not a cluster, but if it was, it wasn’t quite as painful as ones I’ve had in the past; not to say this was not severely painful. (for me a cluster is the greatest pain I can imagine, the pain I had last night would have sent me to the ER if it had lasted longer, but it was not the worst pain imaginable.)
Quick rundown of today. I ate breakfast outside. I took a bath and washed my hair. (this is a big task for me) I had a dentist appointment (check up, cleaning, fixed a small chip in a filling, and a fluoride treatment), went to Trader Joe’s, had dinner at the table with my husband, made “brownies” (hopefully I’ll sleep better tonight), and watched old Dr. Who’s for a bit. I did have a migraine that started shortly after breakfast but it didn’t get above a 6 all day so I was able to function. I used my functional exercises while making brownies and my back hurt less, but it did start to hurt more after I finished. I’m just thrilled I was able to get them all mixed up and in the pan without being in intense pain. Today was a FULL DAY! Tomorrow is an early day, so I’m going to bed.
The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?
It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.
Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.
The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.
Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!
I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.
This month I’m going to do something very different, I’m going to try to keep a running journal of the month, so you might get a bit tired of me.
The idea behind this is two fold, I want to pay attention to my moods, and really see how this new antidepressant is working; and I also want to have a goal of accomplishing at least one thing a day, no matter how small that one thing is.
I’ve been feeling pretty low lately about how little I’ve been able to accomplish because of my pain, I want to prove to myself that I am more than my pain and accomplishments come in all sizes and all should be celebrated. I’m hoping by committing to posting about this on a regular basis I will force myself to stop thinking of the things I can’t do and pay attention to the things I can.
Today I woke with the continuation of a migraine from yesterday, that continued from the day before. I had an appointment with my therapist at 11am so I took a Maxalt and drank a little caffeine hoping it would take the edge off and make the day more bearable, unfortunately, it didn’t. In the waiting room there was a lady sitting directly in front of me and one sitting beside me, they obviously new each other and were having a conversation in normal tones. I was struck by the fact that I could not understand more than the rare word here and there despite the fact that it was a very quiet room. Once again I wondered how I could meet people and socialize. When I left I planned to go by the grocery store to pick up a couple of things but the pain was so great I thought I would throw up before I made it home. I took a second Maxalt when I got home, but again, it simply did not work. I decided to message my doctor and ask if there is another rescue medication I can try as Maxalt seems to have stopped working. I am still hopeful that the Emgality will help, but I need something to get me through the moment.
Today I made it to my therapist appointment! I had a lovely mindful moment with my dog, and a few other mindful moments too. I attempted to do a Body Scan meditation, but I didn’t finish. I will try to do it again before I sleep tonight.
I’m trying hard to not focus on the fact that I can’t cook dinner tonight, or get the dishes out of the sink because my back and head hurt so damn bad. So I’m avoiding the kitchen.
Recap. Let’s see, when last I left off we planned to go to Charleston, SC in September for our anniversary; there was a possibility we might have to move; and I was getting a hair cut. Turns out none of those things are happening or happened.
Trip. After researching a trip to Charleston it just didn’t seem like the smartest thing to do this year. The trip was going to cost us more than twice what we had originally budgeted for our trip to New Mexico, I’ve been to Charleston hundreds of times, Stuart really has little desire to visit there, we weren’t going to be able to see as many people as we’d like and still have a romantic trip…there were just too many things that said this was not the trip for us. We decided it would be best to take a second trip to specifically visit with family and friends, and we are going back to our original plans of going to Albuquerque and Santa Fe to celebrate our 15th anniversary.
Move. I’m relieved to say that we do not have to move, our landlords have decided not to sell the house right now. The house has a pool and the best time to sell is during the summer, there are a few things they want to do to the house before selling it and they wouldn’t have been able to get it done in time to get it one the market for the pool season, so they have decided to wait. That is a huge relief. Soon we’ll be house hunting. That can be fun, and or ahhhh. Hopefully, it won’t take long to find the perfect home for us.
Hair I ended up not getting my hair cut. It ended up being a not so good day and I just couldn’t go. I had been up most of the night with nausea, and when I don’t sleep the next day is precarious. I haven’t made a new appointment yet. I have a case of the nerves about it now. As much as my long hair is hard to wash and gets everywhere, it is very easy to just throw it in a pony tail, and I’m used to it. I think I’m a creature of habit. What if I really mess it up? When I was younger I’d think, “It’s hair, it will grow back” Now, my hair is much thinner, and I’m not too sure it will grow back. Damn I’m old. hahahah
Migraines. I’ve been on the new migraine preventative, Emgality, for a month now. I was told not to expect a reduction in migraines the first month. I talked with others and most on the boards noticed some difference. Here’s my experience:
In February I had NO migraine free days and took medication for 10 days (the maximum number of days allowed) . In March I had 2 migraine free days and took medication for 10 days. This month, I had 5 migraine free days, and I’ve taken meds for 7 days. This may not sound like much of a reduction, but I haven’t had 5 migraine free days in a month in as long as l can remember. My maximum free is normally 2, and I always take the medication for the maximum allowed number of days. This week I actually reached for a rescue med at the first sign of a migraine, like you are supposed to, instead of waiting until it hit an 8, because I wasn’t afraid I’d run out of allowed days before the end of the month. I took my second shot yesterday, cross fingers for me that May brings fewer migraines.
Bipolar Depression. This week I broke down and started a new antidepressant. I tried hard to pull myself out of this funk, this sadness, this feeling of utter worthlessness, but I haven’t been able to. I told myself it was situational, it wasn’t me, and I could get past it if I worked on it. I’ve been working with my therapist and I do have things in my life that can cause depression, but the situations, and my coping with them, are getting better, but the feelings aren’t. It’s time for a little help. I’m having very mixed emotions about this and I’m not sure why. I feel like I’m always going to be a bit off anyway. I’m never going to be normal. I’m always going to be bipolar. When do I stop and just say, this is how I am and it’s how I’m going to be. This is my normal. Live with it. No more medication tweaks. No more added medications. But I want to feel better.
As I’ve wandered through the past couple of weeks I’ve realized how much I have strayed from my mindfulness practice and how much my Mindfulness Mondays helped keep me on track. Each Monday I was reminded how important mindfulness is and how to obtain it. It is time to refocus on this present moment with a few of my favorite quotes and a few photos from the desert.
Mindfulness isn’t difficult. We just need to remember to do it.
This quote is very meaningful for me right now as I remember how important mindfulness is, it is so easy to do, if only I remember to do it.
Mindfulness is simply being aware of what is happening right now without wishing it were different. -Enjoying the pleasant without holding on when it changes (which it will) -Being with the unpleasant without fearing it will always be this way. (which it won’t)
This quote by James Baraz is my all time favorite quote. Be with this day, whether it be pleasant or unpleasant, for it will always change.
Mindfulness means paying attention in a particular way; on purpose, in the present moment, and non-judgmentally.
What I love most about this quote is the last word, “non-judmentally”. I am notorious for judging myself very harshly, and it has held me back in many ways. Another quote by Jon Kabat-Zinn, in part, says “Instead of ‘let it go’ we should probably say ‘let it be'”. I need to just let it be, and stay in the moment.