A Series Of Unfortunate Events

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!

Brody, his first night home.

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 3 people! 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.

My Normalcy During Pandemic 2020

A Roadrunner, Quail, and Hare have all come to visit me recently. Their world hasn’t changed at all.

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?

What are you doing differently?

How are you dealing with how things have changed?

Light Switch Flipped

Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

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.

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

Ending a Horrible Year the Best Way

Image from pexels

I’m still pinching myself, I just can’t believe how much has changed recently, and all for the better. Wow…just Wow.

Our new home

I’ll start with the best news first, we close on our house on the 19th and we move in on the 20th! Yes, we will be in our new home before Christmas! I’m so excited I could squeal! and I probably have! hahaha We found the cutest house in the nicest neighborhood, I just adore it. It’s not exactly what we were looking for, but I just fell in love as soon as we walked inside. The neighborhood is focused on sustainability. The houses are all energy efficient, the neighborhood has a lot of walking and bike trails, it has it’s own coffee shop, and a few other little shops. It has the greenest school in the country that also ranks very high academically. It’s beautiful. The house has enough room for us and Dad, without being too big, and it has a little casita (a detached guest suite) in the back that’s going to be my studio. And I’m going to plant a lemon tree right outside my kitchen window. Perfect.

I’m able to enjoy all of that because my antidepressant is working better. I still haven’t gotten the approval for the ketamine, but we increased the dose of the Fetzima and it is helping more, I still feel like I have this black cloud over me, but it isn’t dropping buckets of rain and hail on me all the time. I can see the sun, maybe even a rainbow.

I’ve also had a few migraine free days. Yes! I really said that! The days aren’t consecutive, but I have had one here and there. I normally do not wake up with a migraine now, I get them in the afternoon usually. I’m not having as many severe migraines. They are normally moderate in intensity, when they are severe the severe stage doesn’t last as long. For example, I might have a migraine that last 9 hours, 2 of them will be severe. I did have a severe day one day this week, so it still happens, just not like it was. It looks like the Aimovig is doing something. Yay!!

The nerve block I got in my neck started helping, not completely, but I have been waking up most days without my arm being asleep or aching terribly. Every once in a while it will happen, but most of the time nope, it’s good. My follow up appointment was rescheduled because my doctor was sick, so I don’t know what the next plan is, I’ll find that out soon.

I had planned to post much more often but I’ve been so busy with all of the house stuff, doctor appointments, holiday stuff….I am so busy! I will try to post more soon, but I can’t promise anything, the next few weeks are going to be crazy busy! I have a lot of post written in my head, I just need to type them up.

Not everything in my life is perfect, but I’m feeling so much better I can’t think of a better way to close out a really crappy year and start 2020.

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.

Catching Up After An Unintentional Time Out

A monsoon storm, the first significant one of the season, crashes a few bolts down just before the gates opened for the Annual Bloom Night at Tohono Chul Park, July 13, 2019, Tucson, AZ. Kelly Presnell / Arizona Daily Star

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.

Relief. The Importance of Keeping a Medication Diary

Tucson night sky

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.