I’ve started countless posts but, like so much in life now, I haven’t finished any. Do I write about me? How my treatments aren’t working as well as they were in the beginning? How my migraines and vertigo have once again taken over my life? or do I write about the travesties that are going on in this country? I’ve never used my blog as a political voice, I never want anyone to feel excluded or uncomfortable here, but I also feel so compelled to shout from the rooftops that I demand change! I was at the point recently that I simply no longer wanted to live in a world where people treated each other the way we do here. On Juneteenth we celebrated the 155th anniversary of the freedom of the last slaves in the United States. 155 years and racism is still rampant. Our leaders should be bringing us together, instead there is fuel being thrown on the fires.
It doesn’t help that each day I look outside and literally see fire. Normally when I need to escape from the stress of the world I retreat to nature, it calms me, but where I live we are in the midst of a natural disaster. A fire, named The Bighorn Fire, started by lightening on June 5th in the Catalina Mountains surrounding Tucson has burned over 58,500 acres so far and it’s 19% contained. We have an air quality advisory because of the smoke. The masks might help in more ways than one huh?
Speaking of masks, our mayor has issued an ordinance requiring everyone over the age of two to wear a mask when in public (there are a few exemptions) if you do not wear a mask you can be fined or be required to do community service. This is in response to the extreme jump in the number of COVID-19 cases Arizona has been experiencing since we reopened. I applaud her bravery for this, I wish our state, and national, leaders would take such an initiative. I feel it’s my Civic and Human duty to wear a mask. I wear a mask not to protect ME. I wear a mask to protect YOU! Is this political? I don’t think so. This is a health issue. We need to take care of each other. Wearing a mask is to prevent the spread of the virus when you are asymptomatic. Be kind to your fellow human, wear a mask. The life you save may be someone you love.
I think about being here, and talking with you, my friends. I think about sharing my thoughts, my fears, my pain, my dreams. June is Migraine and Headache Awareness Month. Yesterday was Shades for Migraines Day. I was so proud of myself that I at least got a post on Facebook and Instagram with a photo of me and Stuart in our “Shades”, but I had a lot of post planned for this month, they didn’t happen. So many other things happened this month. My migraines are back to being daily. I haven’t had a break in days other than the few hours I get when I go in for treatment, but it no longer last. I still have lots to say on this subject and just because the month is going to end doesn’t mean I’m going to stop being an advocate. I will be posting much more about migraine. I have a lot of information to share, a lot of promise for many people, a lot of hope. Oh, and I will be seeing my doctor in about 3 weeks, so cross your fingers we can get some kind of rescue medication for me. As I said a lot of hope out there. And that’s how I will close for the day…..with hope.
“Meditation gets you out of your thinking into the present moment by focusing your attention to your sense perceptions (sight, sound, touch, etc) with 100% focus.”
Yay. Sure. 100%. When I meditate it’s 50%-50% at best. My monkey mind swings from trees with great abandon, my thoughts rambling, rumbling and wildly roaming.
So! Why meditate?
Meditation has been rigorously scientifically studied and it’s shown to literally change the brain. A regular meditation practice helps significantly with depression and anxiety, meditation has been shown to help with anti-aging, fighting infections, contributing to a sense of control and combating feelings of loneliness.
Nearly anything can be turned into a meditative practice as long as you focus on leaving your “head” and experience the world through your senses.(Sorry – Television, video games and reading don’t count as meditation because they simply replace our own thoughts with more stimulating ones.)
Writing has been harder than normal. I think about it every day, things I want to post about that aren’t about me, then something happens in my life and, well, I just haven’t been able to get it together enough to write informative posts, I haven’t been able to write much of anything except in my gratitude journal and migraine diary. So here’s another post all about what’s going on what me, it’s a big change from a couple of months ago.
Depression ~ As you may recall, the Spravato treatments were doing amazingly well at treating my depression and migraines (depression was gone, and migraines were cut almost in half), then we cut the dose and I didn’t respond as well, so we increased it again a couple of weeks ago. My response to the increase hasn’t been as expected. I’m not feeling better. My depression isn’t as bad as it was before starting treatment, I still think I’m handling things remarkably well considering how much has been thrown at me recently, but I can’t lie and say I feel like I did. The depression isn’t gone, but it’s not all consuming, I’m very grateful for that. Unfortunately, my migraines have not responded to the treatment at all. They have increased back to almost daily, and the intensity has increased too. Most people would say, no wonder I’m more depressed, but as I noticed before, sadness and depression are different. Could this tip me into depression, or should I just be sad? Should this medication still be working as well as it was, or should I be feeling this little bit of depression? I don’t know.
Bad Trip ~ It may not matter anyway. I had a treatment on Tuesday and I had a bad reaction, or I guess you could say I had a bad “trip”. I haven’t dissociated during a treatment before. Normally, I only feel a bit drunk/high, in the first 15 minutes or so I can feel a bit more intense but I normally just go with it, I’ll relax and meditate, or I’ll giggle with Stuart, or I might even try to read, it all depends on how it makes me feel, but I always know where I am and what I’m doing and I’ve never felt bad. This last treatment was totally different! Within the first few minutes I started feeling hot. I was dizzy. I didn’t want to be touched. I felt sick. Things started to go weird. I told Stuart I was never doing this again. Suddenly I wasn’t in the room we were in. It is very hard to explain, and I can’t remember it all. I always knew Stuart was there but he didn’t always look like Stuart. I kept telling him I was dead. I wasn’t afraid of that, it was just a fact. It was the only way my mind could explain why things were do different. He asked if I was dead then how was he there, but I just kept telling him, “I’m dead”. Then I started throwing up. I knew I threw up, but I don’t remember the first time. Things started to come back and I was in the room again. I was lying on the couch and Stuart was sitting on the floor next to me, holding me and taking care of me. We kept telling each other how much we love each other during this whole thing. I always knew he would be there. It took a long time for me to totally recover. When I went home I was still very nauseous and felt awful. Stuart said I was having nystagmus during it, and I was having severe disequilibrum for a while, so we are wondering if I was having a Meniere’s attack at the same time. The way my body felt recovering was about the same, but no one knows. My doctor decided I should take a week off from treatments, so I go back on Tuesday. I’d lie if I said I’m not nervous.
PTSD ~ I fell last week. I was walking across my living room on my way out, kind of rushing, and tripped. BAM! I went down hard! We have tile floors, where I fell there is a rug, but there is no padding. It hurt so bad I thought I might have shattered my knee cap, and the pain in my artificial hip scared me, but all I did was scrape my knee really bad and I have a few bruises that are still coming up. I think the pain was increased by the fear that what happened last time Stuart was laid off was going to happen again. Last time I hurt my hip and it didn’t get better and that’s when we found out I had avascular necrosis. I ended up barely being able to walk for months before my hip replacement. Anyway, the PTSD from all that just spiraled. I was back there. I’m okay about it now, and my knee is healing. I’m being gentle with myself.
Migraines ~ When I had my virtual visit with my migraine doctor in early May I was increasing the Spravato again and thought I was doing pretty well. I don’t have a rescue medication that is working, so she gave me one of the new rescues, Ubrelvy, to try. I didn’t respond to it. I sent her a detailed message about things, and she said I need another visit. First appointment I could be squeezed into is on July 17th. So that means I go until then with NO rescue medication. I do have this new device called Nerivio, (that I planned on posting about), that is helping, but you can only use it 12 times a month and you have to catch the migraine within 30 minutes or it does not work. I’m having a lot more than 12 migraines a month, and sometimes it’s hard to tell when my migraines actually start since I have a chronic daily headache. I have gotten so used to living with that pain that I try hard to ignore it. On good days my baseline is around a 3, but recently it’s around a 5, so it’s hard to tell if that 5 is migraine starting or my baseline. I can only tell when my light and sound sensitivity gets worse, or I get nauseous…or have many of the other symptoms. If I have an aura, I can catch it, but that doesn’t happen all that often. I’m really hate that there are so few headache specialist that you can’t get in to see them when you really need it. As much as I’m thrilled that there have been a new class of migraine medications released recently, I hate there are still so few options out there. Oops, I started to jump on my soap box, hopefully I will be able to write a whole post for that! hahaha
Just Stuff~ I’m still staying home even though my state has pretty much opened up. I still go over and visit my neighbor on her patio at a safe distance. We do have dinner with Stuart’s dad once a week, I go when I’m able, always keeping social distancing. (Stuart sees him more often) We plan to do ribs and the fixin’s tomorrow. I hope I can go, or Stuart and Dad will have a lot of food. I’ve actually increased my precautions since they opened up the state, there is way too much going around. We did go for a drive through the Saguaro National Forest, that was beautiful.
So late last night I wrote this long post detailing everything (well most things) that have been happening lately, I decided that most people really don’t want/need to read all those details so let me just sum it all up. (if you are really interested I left the detailed post at the end)
Stuart was laid off yesterday because of lost revenue due to COVID-19. It came as a huge shock and I’m still processing it all. I know we’ll be okay, we are in this together and that’s all that counts.
The beginning of last month we cut my SPRAVATO (esketamine) from twice a week to once a week and I did not do well, both the depression and the migraines came back full force. It has not been a good month. This week we went back to twice a week, let’s hope I see improvement soon. More about this later.
About a week ago I was stung by a scorpion while sitting in my living room. I didn’t have to go to the ER or anything like that. I’m fine. I just hurt like hell, and I still have this spot on my leg that feels kind of weird when I scratch it, but it’s getting better every day.
I had a severe allergic reaction a couple of days ago to something, I don’t know what. My doctor thinks it was a combination of things. Simply put I have had too many allergens bombard me at once, so it wasn’t just one thing, therefore it probably won’t happen again. But if it does I have lots of Benadryl and my EpiPen.
So that’s the series of unfortunate events that have been happening in my life. It really hasn’t been all bad, but this post has gotten way too long! I’ll post more soon, I hope, and tell you all happier things. Like, we got added a new member to our family!! We rescued a kitty. I’ll tell you all about Brody and more soon!
If you’d like to read more details here they are, this is the post I wrote last night….if you read it, you can tell I was not in the best frame of mind. I hope you’ve had a better month.
It’s 1:33am and I’m sitting here in tears, today, um yesterday, the most recent and the worst of the latest in a string of pretty crappy events happened and I’m not taking this last one very well. Stuart was laid off. We were finally affected by the backlash from COVID-19. It came as a huge shock. There was a big layoff in his company right when they started the work-from-home phase, we felt it was a knee jerk reaction at the time. We don’t know what to think now. There is no rhyme or reason as to who they chose to lay off. The company he works for isn’t really losing any business. They are a huge irrigation company for large golf courses, agriculture….they do supply Disneyland, but I don’t think they stopped watering their grass just because they’re closed, and that is just a small fraction of their business (all over the world). The only thing they are having trouble with is getting parts in from overseas.His team is down to 3people! They can’t do all the work and no one knows how to do the things Stuart does. They just shot themselves in the foot.
I’m freaking out. It’s not the money, not really. We have money saved, unemployment is higher right now, he got a little severance package, and we have my small disability income and Medicare, however he was laid off before and was out of work for almost a year, I do not want to go through that again. It totally depleted out savings I finally felt like I could have nice things, now I feel like I have to scrimp and save every penny. I had a house keeper coming in once a month to help me out, I can’t do that now. We had plans for the house and yard, not any more…. I’m heartbroken. I’m shattered.
Now for at least some of the other things that have happened over the last few weeks. We cut my SPRAVATO (esketamine) treatments down from twice a week to once a week and I crashed hard. The depression came back in a huge black wave. It has been suffocating. With the depression, came the migraines, and the increased dizziness and vertigo. The good news, we increased it back to twice a week this week, hopefully I’ll be feeling better soon. But I really do not want to be tied to this stuff twice a week, that takes two days out of my life every week. That isn’t really feasible. I could never even go out of town, and when Stuart gets a new job I don’t think they will be too pleased that he has to take 2 days a week to take me to these appointments.
Next, I was stung by a scorpion. Stuart lived in the desert for many years and never even saw a scorpion, I live here less than 2 years and get stung by one while sitting in my chair watching TV. The irony, you gotta laugh. I had no idea what had happened, I only had this very intense nerve pain in my leg. I yelped in pain and told Stuart, then I noticed that there was a red spot on my leg, and he got me a Benadryl and ice real quick. Because of his quick thinking (we thought it was a spider bite) it didn’t swell at all. It hurt so bad that night I barely slept. For two days it hurt and felt numb at the same time. This was over a week ago and still if I scratch in that place it feels funny, kind of tingly, but it’s getting better. Oh, Stuart found the scorpion the next day, dead. When I looked up the symptoms it was dead on for a scorpion sting.
Day before yesterday I had a pretty severe allergy attack. I was just sitting in my living room and my throat started to close up. Stuart was just in the next room but it closed to fast I couldn’t call out. I took a Benadryl fast, and started looking for my inhaler, which was hard to find simply because I was getting confused. I finally took about 3 Benadryl and used my inhaler so many times I just don’t know. I’m just glad I didn’t have to use my Epi Pen or go to the ER. It did happen again that night, but I got the Benadryl in faster and it ended faster, then yesterday I took Benadry every 4 hours and I was fine. Today I’ve itched a lot. My doctor (I had a telehealth visit with my migraine doctor yesterday and I had to tell her because I had taken my migraine shot the night before the attack) she said it could be a high load of allergens. The allergy count is very high here right now, and then the scorpion, add in a powerful medication, and we got a cat…the combination could have caused it, but one on it’s own probably wouldn’t. So I’m okay there.
I told my neighbor, who has become a very good friend, that she must think I’m a calamity of horrors. I was so touched by what she said, “No, I think you are a beautiful young lady with the most positive outlook I have ever seen” She will never know how much I needed to hear that.
I’m so incredibly lucky, my life really hasn’t changed all that much during this craziness, yet, it has.
We’re lucky, no one close to us have lost their jobs or anything like that. It really breaks my heart for all who have and continue to each day. I don’t have anyone close to me who is on the front-lines treating people, I’m so very thankful to these amazing people. I really don’t think I’ll know just how much this has really affected my life until it’s all over and we find out what businesses have survived and things like that. I’m desperately worried for these people. I’m helping all I can, ordering from local sites online, buying gift cards…, but will it be enough?
For me personally, I don’t normally go many places during the week, to doctor appointments, that’s about it. Well that was about it until recently. Recently I started getting more involved in my neighborhood; I was going to Women’s Coffee on Tuesdays and a Women’s Empowerment Journaling/Discussion Group on Thursdays. On the weekend we’d cram in everything else, grocery shopping, seeing dad, entertainment…ANYTHING else! Of course, all of this changes if I’m not feeling well, so things change a lot. I guess that’s why I don’t feel that things have changed all that much, because I’m used to things being canceled. I’m used to staying home, I’m used to not being able to do things I’d like to do, so that part of things isn’t really that stressful for me. But it’s different when you have to do these things and when you are forced to do them.
Truthfully, things really haven’t changed that much though.
I have still been going in for my SPRAVATO treatments twice a week, I start once a week this week. And it has been amazing! First let me assure everyone that we are extremely cautious. I’m the first patient seen, the room is completely sterilized, I only see one person, and they never touch me. Now for the results, as I’ve told you before, my depression is gone! I do feel sadness, but it’s not the same. Sadness is situational and it feels different, oh so different. I never knew just how different it felt. What I haven’t shared is how different my migraines are! I had TWELVE migraine free days last month!! And so far I’ve had 9 free this month! Did I say AMAZING?? Understatement huh? So, let’s cross our fingers it stays this way now that I’m going down to once a week.
I still see some of my neighborhood friends, just from a distance. We have “6 foot plus” patio visits. A couple of us will meet on our patios sitting 6 feet plus apart and just visit for an hour or two. It’s so nice to have a little bit of normalcy in this craziness. I admit I’m upset that as soon as I start feeling well enough to get involved and make new friends I’m sidelined by something that has nothing to do with me, but it is forcing me to take it slower, and that might be a good thing.
Stuart working from home seems weird. Even though he did it for seven years, I was really sick then, now that I’m not as sick, and I got used to him not being here, it’s harder having him around all the time. Well, not hard really, just weird, but it is kind of nice too. Now that he has finally gotten off the dining room table and has his office set up it’s much nicer! Plus, he doesn’t have to add in travel time to go to or from work!
I’m trying to spend more time in my studio, but I haven’t found that I’m actually creating more, I’m just hanging out in there. I’m enjoying that a lot though. I go in there and sort through emails and organize stuff and think of things I want to do and plan things…..But actually paint or anything, yeah, I haven’t done much of anything. I don’t know why. I’ll get there. It’s been a while.
Yes, our weekends are different. However, we are still seeing dad if we can. We take him his groceries on Sunday. (Stuart shops for groceries during the week, not on the weekend, that’s just crazy. He says there are still so many people there with no masks or anything just leisurely shopping. WTH?) We also take him lunch or dinner and spend some time with him. We are the only people he sees. We eat with him way on one end of the table and us on the other. It’s quite funny trying to maneuver the house and stay 6 feet apart, but we do a pretty good job. When we were there yesterday he finally talked a little about Margaret’s death and Stuart’s mom’s death, he doesn’t show his emotions normally and doesn’t talk about those kinds of things, I was very pleased to hear him talk about it. It has to be so hard on him. I’m so glad we are able to see him, at least a little, now. He wouldn’t allow us to come see him for a long time, he’d only allow Stuart to come drop off his groceries. It really takes a load off my mind to be able to see and talk to him.
We are trying to do some walking around the neighborhood. I’m trying to do a bit of yoga and more meditation. We put stuffed animals in our windows for the kids to see, and I put a painting in the window just to share prettiness. A lot of people in my neighborhood are doing the same. We are also doing sidewalk art. I haven’t gotten mine done yet, I just got some sidewalk chalk! When I do I’ll take a picture. I will admit I’m eating very poorly, that needs to change.
How many of you have gained weight during all of this?
My mother in law passed away night before last. When you hear about people dying right now, you think about The Virus, but there is a lot of death going on from other causes, sounds a little odd, but life goes on. Babies are being born, and people are dying, and we aren’t able to congregate during these times like we normally are, and that sucks.
Margaret has been living in a long term care facility because of advance Alzheimer’s for over 2 years. When they locked it down last month and no longer allowed my father in law in she started to get worse. We’ll never know how much longer she would have lasted, but we are thinking she didn’t fare well without him. Right until the end she always knew who he was. They warned him that he would be one of the first people she forgot because they had only been married about 7 years when this started, but he spent every day with her, and she never forgot. She didn’t always know his name, and she didn’t always know he was her husband, but she knew he was her love. She lit up when he came in the room, she reached for his kisses when he had to leave. I’m so very glad they found each other, I only wish they had more time together. I’ve not seen two people more in love.
They allowed him in 3 days before she passed, so he was with her at the end. I’ll be forever grateful for that. He was the only family member who got to say goodbye. She has 3 children and grandchildren, they live across the country and could not travel during this time of isolation, but it would not have mattered, they wouldn’t have been allowed in.
There will be no real service at this time. 10 people are allowed at her internment, my father in law, her caregiver, and a couple of her life long friends, all are high risk, so even this will be will be strained. When the isolation is over there will be a memorial service, but that is so different. Right now we can’t come together to grieve. We can’t hold one another. It’s like it’s not real. Nothing has changed. The only lives that have changed are Dad’s, and her caregiver’s. The most I’ve cried is while I’ve been writing this. There has been a major death in my family and it’s like nothing happened. I can’t even hug Dad, he has self isolated, and I don’t blame him, he is high risk, but I really need that hug too. I don’t know how to help. He doesn’t show much of that kind of emotion, so I don’t know how he’s doing really. He says he’s fine. I worry. She was his life. But that’s why we moved here, only how do we help when we can’t spend time with him?
Oh how I wish I could have known Margaret better, but the little I knew her, I adored her. She was an amazing woman! She was a trailblazer! She worked with computers long before it was something women did (some amazing stories there), she did amazing volunteer work, loved to hike, traveled the world, collected beautiful art, had an unwavering faith, raised 3 successful children, and was the kindest woman you could meet. and that’s just what I know about her!
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.
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.)
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%)
Lack of energy (11%)
Increased blood pressure (10%)
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.
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.