Mini Me Update

I know my last post was a bit bleak, but things are getting better, I think.

I still have this dang migraine with no relief in sight, but I haven’t given up hope. My useless stay in the hospital and the indifference my migraine doctor showed about the akathisia has lit a fire under me to find a new headache specialist, which is much harder than you might think.

Luckily the medication that my PCP sent and the medication that my psychiatrist gave me have mostly taken away the akathisia. I still feel a bit antsy and my anxiety is higher, but I don’t HAVE to move all the time. I’m amazed the akathisia was so bad and has lasted so long from 3 doses of Compazine, I’m so grateful for my PCP and psychiatrist for helping me. My PCP even offered to call my migraine doctor to stress how important this was. My migraine doctor did call, after I sent a message to her about how unacceptable it was that she hadn’t gotten in touch with me. When she called she had to talk to Stuart, of course, and said she was out the office on Monday (in my message I told her that another doctor in her practice should have been covering her for her if she was out of the office. I also told her how my other doctors had helped), and said he had been researching how to help. Really? When Stuart first called her we gave her the name of one of the drugs that help with akathisia, so she already had that information. I got it after a quick Google search. It sure didn’t take me THREE days to get it.

Now I have to not only search for a new headache specialist, but I also have to look for a new PCP because mine is moving next month. Hopefully, this will be an easy process, and I’ll find some great doctors. I know finding a new headache specialist is going to be hard, there are only around 500 in the country. I don’t like the idea of having to travel 100+miles to see a doctor, but I may have no choice.

One thing that came from this, I’m really proud of how I advocated for myself while I was in the hospital and for messaging my doctor about how unacceptable her actions (or inactions) were. Since I lost my hearing it has been very hard for me to do that, but I made sure in the hospital when a nurse and tech ignored the fact that I have hearing loss, that they understood what they were doing wrong. Hopefully they will change their actions in the future.

One of the medications my doctors gave me for the akathisia makes me so stupid. I am forgetting everything! I can’t remember what I was talking about in the middle of talking! Right in the middle of a sentence I’ll look at Stuart and say, “What was I talking about?” It has been very confusing, luckily it will go away once I’m off the medication. I cut it down from 2 pills a day to 1 a day since my symptoms are so much better, and the confusion is much better all ready.

I don’t remember what else I was going to write, so I’ll close for now.

How is everyone holding up? Have you known anyone personally who has been infected with COVID-19? Do you happen to know a good headache specialist in Tucson? hahaha

15 thoughts on “Mini Me Update

  1. Oh sweetheart! I am so sorry you’re going through all of this! I DO understand how hard it is to find new doctors. My PCP is still on base because my husband and I kept the insurance after he retired from the military and it feels like a constantly rotating roster of doctors assigned to my case as they rotate in and out of this duty station.
    Compazine is such an old medication! I know the ER doc here love to reach for that first as a migraine med but I have it in my medical file that I have an adverse reaction to it. I hope you ass it to yours too so you don’t have to go through that again!
    Sending you gentle hugs and lots of positive energy to find the right docs and get rid of that friggin awful migraine once and for all!!

    Liked by 1 person

  2. I am holding on to hope for you to find a good headache doctor. I hope in Tucson as traveling is a bit troubled, right now, not to mention I know it must be hard to ride for long periods of time.Yes, my niece’s husband lost his grandmother to Covid. Hans’ mother is in assisted living and it has active cases with one death. It is getting too close to home. We keep being safe. Love You

    Liked by 1 person

    1. Did you know your niece’s husband’s grandmother? Do you know anyone personally in Hans’ mother’s place who got it?
      I now know 4 people personally…maybe 6, I’m not sure if my nurse’s children got it, but I think so. She got so sick she isn’t coming back to work. I’m worried about her, but have no way to check on her.
      I think I told you about the others.
      Yes it is too close to home.
      We are still isolating too.
      Stay safe!
      love you!

      Liked by 1 person

      1. I did not know his grandmother, just heard great things about her, but his side of the family that I know are his parents and brother. I would not have any way of knowing those directly affected by Hans mother’s place, just know there have been cases and more cases and deaths. I am so sorry you knew these people personally as that makes the loss even greater. By too close to home I meant that Mama could get it since she is in an environment where there are new cases reported regularly. I hope she doesn’t get it and am afraid she would not do well with it. It’s tough, really tough. We haven’t seen her in over a year now and hope to see her this month, but it will be her inside and Hans outside in a bubble so there is no contact. He’s the only one who can see her when we do go, but the rest of us can wave at her from a distance, from what I understand. It was nice to see her and talk to her on Zoom over Thanksgiving.

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        1. Oh, I thought you may have known them personally, especially those where Hans’ mama lives. When we visited Margaret I got to know her neighbors.
          It is very tough.
          I sincerely hope it doesn’t hit Hans’ mama, I too am afraid she wouldn’t fair well.
          xoxo w

          Liked by 1 person

  3. HI Glad to hear you are headed in the right direction. Hanging in there, I had a virus scare and so far so good, I am negative and may get another test soon. Everyone is getting it around me unlike the spring and I do people who died from it. Good luck feel better.

    Liked by 2 people

    1. Hi Patricia,
      I’m sorry I haven’t replied before now, it’s been rough here.
      I’m so sorry you know people who have died from it.
      I now know 4 people who have had it. 2 have had bad symptoms, one is older and I’m so afraid she will have chronic symptoms for it, she was in the hospital for a while, got pneumonia with it, can you imagine?
      How can anyone think COVID isn’t real?
      I hope your virus was just a virus.
      How are you?? I’m concerned.
      xoxo w

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  4. Way to go Warrior Princess — when you can advocate for yourself, it’s empowering!
    What’s the name of the “stupid” drug. I could use that as an excuse when I forgot what . . . (LOL).
    Hope you find some kick-ass doctors — good luck with the search.

    Liked by 1 person

  5. My fingers are crossed for you with finding new specialists and a new PCP. Docs are like a box of chocolates, you never know how many disgustingly awful ones you have to spit out before you get one that’s edible!

    While I’m glad the akathisia shows a little improvement, where even a small bit is better than nothing, I’m sorry one of the meds has such an impact on your functioning. I do think you advocating for yourself is a huuuuge thing to be proud of. It’s not easy, especially when poorly or in hospital or when you’ve been so beaten down by everything. Well done. Hang in there, I still hold hope for there being more options around the corner for you.

    I’m still averaging 5 days of migraines per week but doc is looking at the sinusitis angle now with the chronic inflammation I seem to have everywhere (long story) so with treatment my face is starting to feel a little less horrific. Docs are all clueless as to the migraines though. When I think of everything you go through my heart aches for you. I wish I could do something to help. This shit is awful. Sending my very best wishes & oodles of hugs xxxxx

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  6. This whole thing just totally sucks and I am very sorry that you are going through it all. It has been about a month since this post but I hope you have had some luck finding a GOOD doc, then add a specialist on top of this and it becomes very very challenging.
    Please know that I am thinking of you often…………

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