Chronic Illness · Chronic Migraines · Chronic Pain · Meniere's Disease · nerve pain

It’s been a while-mini-me update

I haven’t been able to write much in a quite some time. Right now I’m having a Spravato (esketamine) treatment so I’m a bit intoxicated, but I’m pain free so I can type. However, since I’m intoxicated this post will probably have lots of errors and may sound a bit strange. You have been warned. Bwahahahaha

My hands have been hurting a lot because of the nerve problems coming from my neck. It’s not up as high as it was, but it’s close, really close. That makes it hard to type, impossible to write, and very difficult to text. I’ve resorted to using talk to text, and you know how that cam mess things up. Not being able to easily communicate well with the outside world is hard.

I’m not sure where I left off last time, so forgive me if I repeat anything or leave something out. If you have questions be sure to ask.

We are still trying hard to regulate my blood pressure (BP). I started this journey with one doctor, but changed to another PCP since the first one didn’t seem to take this seriously. My new provider is a nurse practitioner in the same office as my last doctor who moved away. I really like her and she is working hard on this BP issue. It will be dangerously high one day and then normal or low the next. That’s hard to treat, so I’m going to have a 24 hour blood pressure study next Tuesday. I’ll be fitted with a cuff that stays on for 24 hours. I’m not sure how often it will take my BP, I read online that during this test it normally takes it every half hour during the day, and every hour when you’re asleep. Not sure how much sleep I’ll get with that thing on. I just really hope this answers some questions.

There are 3 reasons that my BP has suddenly risen:

  • One is my Spravato treatments. During the treatment my BP is supposed to go up temporarily, then come back down afterwards. In rare cases your BP could rise and stay up there.
  • Two is my chronic pain, this is actually what my new provider thinks it could be; I take my BP first thing in the morning, before I even get out of bed, and it can be dangerously high when I wake with severe pain. Mornings are high pain times. I did read a study that said chronic pain can cause hypertension. That’s sad. It’s bad enough that we have to live in pain, now we also have to worry about our BP! Ugh!
  • Three, it could just be genetics. Not sure I buy that one. My mother didn’t have hypertension. My father had it later in life, but he didn’t take care of himself. He was overweight, and ate way too much sodium. I am not overweight, and I have been on a low sodium diet for many years because of the Meniere’s.

Another subject, well kind of… The pinched nerve in my neck is causing my hands to hurt terribly. And the Spravato is on the down swing so my pain is coming back…damn! Normally I get a couple of hours pain free at least. This time it was only about 30 minutes. I’m getting so discouraged. All this pain! The nerve pain, the migraines, the muscles in my back…I do not know what it’s like to not live in pain! I thought everyone had some sort of pain all the time, but they don’t! Some people have no pain. That blows my mind. When I do a Body Scan Meditation I realize that I have pain in almost every part of my body. I accept this is the way it is for now, but I also know that life is constantly changing. Just because I accept what is happening to me doesn’t mean I have given up, it just means I’m not using more energy fighting it all the time. I accept it’s there, that doesn’t mean it’s always going to be there.

I have been using the backspace key much more than any other key today. Constantly seeing errors and trying to fix them. I’m sure I haven’t gotten them all. Hell I can barely focus on the screen to see what I’m typing.

I had a virtual appointment with my headache specialist last week; she wants me to go to a headache clinic, either Diamond Headache Clinic or Jefferson Headache Clinic. The first is in Chicago, the second is in Philadelphia. What a long trip that will be. Mayo in Rochester is also an option. Evidently the Mayo near Phoenix isn’t that great with migraines. Go figure. We are in the process now to get me in one of them. It’s a long process and I’m afraid I might be going in the winter. I live in the desert, I do not like cold, nor do I have clothes for it. But I sure don’t want to wait until spring to break this damn migraine. the pain has been so severe.

I had a panic attack last week. That was scary. I really feel for people who have then often. They are relentless and illogical. I was terrified, but I had no reason to be. I have all these tools to help me get through things like that, but I couldn’t even think about how to do them. Luckily S was there to remind me to breathe. He had a few panic attacks last month, that was hard to see. I felt so helpless, even though he told me I helped him a lot. He told me during my attack, “At least I can understand now”. And now I understand how hard it must be on him to see me in pain all the time. Especially when I have vertigo with it. And more.

Well it’s about time to pack up and leave the treatment center so I guess I should close for now.

Seems like there was more I wanted to share, but I’m out of it. Not just because of the Spravato, I’ve been a bit out of it all the time lately. The migraine symptoms are in full swing.

Oh! It has been raining! So excited we are actually having a monsoon season this year! We had no rain last year, and the plants have really suffered. I’m sure the animals have too. We had more rain in one day this year than we had the whole year last year. The past two years have been very dry. With this much rain, we might have a super bloom (wild flowers blooming everywhere!!) in the Spring.

I hope all are well. Tell me how are you holding up?

Remember, I’m posting this without reading it or editing it, please be kind.

10 thoughts on “It’s been a while-mini-me update

  1. HI Sorry to hear you are not much better. Instead of typing have you tried to use the microphone on the phone to record? Podcasts are popular now too, you could record or would that be too much for you? Which type of computer do you have? There maybe a way to speak out and then edit. Healing thoughts sent.

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    1. Thank you Patrica. You are very kind to try to figure out things for me.
      Honestly not writing hasn’t just been about my hand, it’s also these migraines. I can’t concentrate enough.
      Thank you again. 💜

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  2. Typing while intoxicated sounds like it could result in some fun reading. 😁

    Fingers crossed that the headache clinic appointment isn’t in winter. Do you have a choice of where you can go or is it wherever the appointment is?

    Got my appointment with the ent, hearing test is a week before phone appointment. Both in December. New doctor, new set of eyes.

    Also been trying to get my steps up so, of course, my body rebelled and I had a drop attack and got a mild sprain on the same ankle I sprained years ago with a drop attack. So finished a couple of tv series the last couple of weeks. Good times and all that. 😝

    And yay for the rain!!!

    Love and hugs to you and S.

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    1. I may have written intoxicated, but I don’t think it was fun reading 😅

      The clinic will be either Diamond Headache Clinic in Chicago, or Jefferson in Philadelphia. Both icky winters…much like yours, I believe.

      December! Ugh! I’m having trouble with the idea of not being able to get a test for two weeks. I want to know now! Why two weeks for me to come into a lab and pee in a cup? 🙄 Obstacles.
      My new Dr want it to test my adrenals. I’m eager to find out the answer.
      I’m looking forward to hearing your experience with the new eyes.

      I’ve been trying to increase my steps/activity too, and I think it might be starting to rebel. No drop attacks, but more spins and nausea.
      I hate you messed up that ankle again. Same sidewalk?

      So much rain in such a short amount of time. We made national news because of flooding. Don’t worry it’s not bad here, we’re safe. Thankfully it’s not supposed to rain for a few days, that will allow the ground to soak up more. Then rain, rain!

      Love to you and G. 💜

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  3. I’m sorry you’re hurting, love. I wish I could take your pain away. I hope you get into a migraine clinic and they’re able to offer some real help to you. You inspire me with your strength! Sending you gentle hugs and so much love!!

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    1. My strength?!?! 🤣😆 it’s funny how strong we look on the outside and the inside is a scared little girl.
      You are one of the strongest people I know.
      Always sending you 💘

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  4. I am late to reading this. I have the attention span of a gnat or a flea. Honestly, I forget just about everything these days — including checking up on friends.
    Sorry your pain is so relentless. Hey, if you do go to the Phillie clinic — maybe I can come visit you? Not that long an amtrak ride from here. Winters in the Northeast vary — we’ve had some milder ones.
    My lack of communication doesn’t mean I’m not thinking about you — I’m not that forgetful yet, lol. A spike in pain, the tree falling on the house, and other stressors seem to occupy too much time and energy.
    Next month I have an appointment with a new pain management doctor — he is supposed to specialize in neuromusclarskeletal issues. I’m positive this new pain spike is coming from the back of my neck, and not part of the TN2 pain spectrum. Hopefully, he can provide some insight, suggest a physical therapy routine, perhaps. My current pain management doctor is swamped with patients, and it takes months, now , to get an appointment.
    Anyway, hope you get some relief from the pain. I understand the concept of acceptance: this is what it is. Not giving in; just “resting” easier with it. I can’t remember a time when I didn’t have some sort of pain — one of my earliest memories is being fed a “baby” aspirin, crushed and mixed with strawberry jam. I was probably around 2.5 or 3. Sigh.
    Sending extremely gentle hugs and soft, peaceful vibes.

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