Week and a day in review

On By WendyIn Chronic Illness

I didn’t do it. I intended to do it. After I missed one day, I still thought I would do it, but didn’t write a single journal entry this past week. I’m such a slacker! I still kept up with my migraines on the Migraine Buddy app, so at least I have that information. Now let me share some of what’s been going on this past week.

On Saturday I had a vestibular migraine so debilitating that I could not walk without assistance. I stayed in a dim room (I really want black out curtains), in silence, with ice on my head all day. (The symptoms I was experiencing included vertigo and dizziness, light sensitivity, noise sensitivity, scent sensitivity, nausea, cognitive impairment, blurred vision, and numbness and drooping of the right side of my face. It was a cloudy icky day.  Finally around 8:30 that night it started to rain.  When the barometric pressure eased so did my migraine, just in time for bed.

On Sunday we went to have brunch with Stuart’s Dad and his wife at her home in memory care. It had been too long since we had been there for a visit, it was nice, but we sat in the little restaurant for way too long for my physical comfort level. By the time we left my back was hurting pretty bad, and I was starting to get pretty grumpy.  I had been feeling so much better since starting the new anti depressant, but Sunday I was touchy, sad, and down on myself. I knew I missed a dose on Friday, but dang. Then that night I realized I missed another dose, I was so angry and ashamed I couldn’t even look at Stuart. (overreacted?)  When I saw my psychiatrist on Tuesday I found out that the prescription she called in was for the wrong dosage, so for the last week I have been taking half the dose I was taking the week before. Oops. So no wonder it really messed me up when I missed a couple of doses!  I’m trying new strategies to remind myself to take my meds with breakfast!  So far so good!

Back to migraine talk. I mentioned in a previous post that I messaged my doctor and asked about a new rescue medication because the Maxalt isn’t working any more. I finally heard back from her, there was a problem with their patient portal, after it was fixed I heard from her right away and we’ve talked a couple of times since then, so I feel better about that. Here’s what’s going on there: She suggested one of two things, trying Zomig nasal spray (it is another triptan, but could help more in this form) or try Migranal nasal spray (it is DHE in nasal spray form). I’m trying the Zomig because my insurance will cover it (still cost a lot), my insurance will not cover the Migranal, however, if the Zomig does not work we will appeal to the insurance company to see if they will cover the Migranal. She is also trying to get another treatment approved, a Sphenopalatine Ganglion (SPG) Block. The SPG is a group of nerves linked to the trigeminal nerve, the main nerve involved in headache, and is located behind the nose. They use a catheter through the nose to apply lidocaine to the SPG. I’ve been reading about it, and I’m not sure exactly how my doctor is planning on using it with me.  From what I’ve read it has been shown to reduce chronic migraine frequency and pain severity over a 6 month period after having the procedure done twice a week for 6 weeks. So yeah, I’d like to try that.

The above was written last night, May 16th, I thought I’d finish this up this morning and post it, but today did not go as planned, following is a recap of today.

Today started out pretty dang good.  I decided to try to start the day completely silent to see if my migraines would hold off for longer.  It was a nice way to start the day, the silence kind of forces me to be more mindful. I ate breakfast outside, sat out by the pool, did my breathing exercises, and started to do more of my yoga exercises, but the sun was too bright. I was still feeling good so I decided to sweep the front porch and patio. Gaah! That was the biggest mistake of the week! I got about half of it done when the pain in my back started to get too much, I slowed down and tried to get to a good stopping point. Then my vision got wavy, the pain started in my head, and my back seized. Oh boy. I dropped everything where it was and got inside as quick as I could so I wouldn’t fall down outside. Things calmed down and I thought things were going to be fine, I just had to rest. After about an hour things were going good. I was ready to get up and maybe do something, then the vertigo started, and I was not going anywhere. The rest of the day has been filled with these on and off sensations of vertigo and pain.  I wanted to try the Zomig, but I’ve already taken medication 7 of the 10 days I’m allowed in a month, I decided to save it for days when I have to be out somewhere, or really want to do something fun.

Speaking of something fun, we are planning on going to the botanical gardens this weekend, it is supposed to be a very nice weekend for it.  Cross fingers and toes we can make it there, I really want to go to the Butterfly House, and it closes for the season soon.

the photo above is by the pool, it was taken this morning.  It is my favorite spot in the yard, especially this time of year with the yellow, red and purple blooms.

18 thoughts on “Week and a day in review”

  3. Thanks for bringing me (and us) up to date on what’s happening.
    I am especially interested in the migraine treatments. I am to the point I need to try to find a neurologist, (might need two actually — I’ll email more) about my migraines. This last generic brand DID NOT work as well, or these combo migraine/tension/sinus need a more aggressive approach.
    I have read more about the nasal sprays (I think we once corresponded about that option), but I’m sure my insurance doesn’t cover either, yet. My latest batch of generic Maxalt arrived this afternoon, and I think it’s back to the old brand. Will see if there is a difference. I have slipped into the chronic migraine category (and not due to rebounds, I’ve been very careful — I do use more mostly because of ALL the pain that inhabits my side of the face.)
    Enough about me — just that I’m very interested for your sake too. A way to tame that head of yours! What do you think of the app? I’ve never tried a health related app (hell, the only app I use is the state transit one, unless chrome and text are considered apps?).
    I love the picture of your yard. No wonder you like to spend time there. Is that a statue of Mary? We have a resident one — the neighbourhood is full of Mary statues. I keep wanting to put a Buddha in, but . . .
    I do hope you get to the botanical gardens AND the butterfly house. I love butterfly conservatories, as you know, and Cathy and I visited the one atop the natural history museum many times. The best I’ve experienced is outside of Niagara Falls, Ontario. So beautiful — all glass dome and environments. We feel especially lucky and grateful when a butterfly or dragonfly alights upon us. (in Conservatories and out in the world). They are light as a breathe! You probably know to where something with bright colours. It wouldn’t work for us, but they like certain scents, too. I’ve seen folks act as magnets due to scented products.
    Well, this is probably the most you have heard from me in a long time. Think of you always. I’ve been just too damn tired (or in pain) after I do what has to be done. Sigh.
    I will try to get an email off to you this weekend.
    Love ya.

    Liked by 1 person

    Reply

    1. I too have not been up to writing, no worries. If tomorrow is like today I may not make the butterflies.
      I do find the Migraine Buddy app helpful, as long as I use it. I find one report very helpful in keeping up with how much medication I take per month.
      I take the generic form of Maxalt. After your issues, I went back to name brand for a while, but I have found no difference in quality no matter the manufacturer. I don’t think they have a generic in the Zomig or Migranal (not sure I spelled that right).
      It is a statue of Mary, there are offering out there to her too, you know I didn’t do that, but I find her peaceful. I would like a Buddha, there will be one at our house. . We do have a giant spider I gave Stuart for his birthday. 😆
      Cross fingers I can sleep tonight, it was a bad night last night.
      Love you sis. 💕💕

      Like

      Reply

      1. Thanks for the migraine information. As I’ve written in emails, I really should see a migraine specialist. I have to get the energy back to take care of myself — headaches, therapy, etc.

        Liked by 1 person

        Reply
  4. Pen Wize

    I used to be plagued by migraines like this, having several a month and they lasted for days at a time. It was hell. I don’t know what changed but now I hardly ever get a migraine. I wanted you to know that I can sure relate to all you describe. I’m have come a long way and I’m even working part-time as a lifeguard and swim instructor. The downside to this is that I am back to no social life. When I am not at work, I’m in bed. Sigh. I need to find some kind of middle way. I must say too, that I am impressed with how much reveal. Have you had any backlash to what you share? I have always been afraid to reveal how much I go through. Thank you for your bravery and courage.

    Liked by 1 person

    Reply

    1. I’m so happy for you that you are no longer plagued by migraines to that extent, I wish it was all better. I’m thrilled you are able to work, I wish it didn’t take so much out of you.
      I only had one instance of backlash from how much I share, but it came from someone who I had already cut out of my life. My family and friends know I have a blog, but most do not read it, those who do truly want to know it all. I have sometimes wished I had published under a pseudonym so I could be even more open. Yes, there are actually things I do not share. 😳😆
      But for the most part, I write this for me, and to let others know they are not alone, to do that I feel I need to be vulnerable.
      If you want to share your story but are afraid of the repercussions, I suggest using a pseudonym. As my life has changed and other people have entered it, I have wished I had done that, so I could feel free to talk about how those people are affecting me. (Sometimes the people in our lives affect our health, it’shard not to talk about it).
      Thank you for the support and encouragement.
      If you ever need to talk 🙂❤ I care

      Like

      Reply

      1. I’m going to try replying again. For some reason it wouldn’t get it to post. Word press can be a weirdo. I’m happy for your updates and wish for relief ASAP. Maybe the med change will ease things up. I get impatient for this to happen for you. Huge hugs xo

        Liked by 1 person

        Reply

      2. Hugs and more hugs. Hope you get meds that work for you.

        I take my meds after breakfast. Had to train myself to get into that habit. Easier on the stomach too when I have eaten first. Very noticeable when I miss a day and my heart starts racing and I don’t realise what I have done because it is second nature to take the pills in the morning and I think I’ve taken them.

        Hope you made it to the botanical gardens. It sounds wonderful. Send some of that weather our way, will you? It’s been raining almost every day lately. We need some sun to dry out. ☀☀☀

        Liked by 1 person

        Reply

        1. Thank you my friend.
          I’m trying hard to get in the habit, it must be done! This med will not work if it is not taken with food, so I have to get my brain a working!

          I made it to the garden, at least I made it long enough to go to the Butterfly house, it was beautiful. A small place, but so lovely and peaceful. Couldn’t stay long, but I made it! I even saw a butterfly emerging from a chrysalis. 🦋

          It was cloudy today, but that brought the temperatures down to a nice degree. (Of course my head hates the clouds though).
          I do wish I could share the sun with you.

          Love and hugs

          Like

          Reply

Leave a comment