I’m still pinching myself, I just can’t believe how much has changed recently, and all for the better. Wow…just Wow.
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.
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.
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.
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.
When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.
You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.
After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.
We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)
I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.
I’m sure I’ve completely confused you. It confuses me!
Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.
I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.
I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.
Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.
Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?
I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.