Wired and Weird – Two for the price of one

Have you missed me?  Have you EVEN noticed I’ve not been blogging?  Well, I’ve been mishuga, fermisht and verklempt.

In my never-ending quest to feel better . . .  

The short version: Went to an endocrinologist because I thought some of my exhaustion might be due to an adrenal problem.  They took a quart of my hard-earned blood and I peed in an “orange juice container” for 24 hours to be told my adrenals are fine but I have Hashimoto’s disease.

Whaaaaaaaat???  I’ve never been to Japan and don’t even speak Japanese. Seems my immune system is eating my thyroid all up.  Put me on thyroid medication and said I should have about 20% more energy.  With my continual state of exhaustion 20% sounded good.

Three months later . . .  maybe 10% more energy.  So endo doc suggested I take Topomax, a tried and true medication, that will put my brain into deep sleep (my brain stays in REM sleep and I don’t get restorative sleep – that’s the main reason I’m so exhausted all the time).  I researched it and checked it out with my fibro doctor who said it was worth a try.

DSCN6311

NOT ONLY DIDN’T THE MEDICATION PUT ME INTO deep sleep it didn’t even put me into REM sleep!!!!!  I was up for 3 nights and 3 days.  Couldn’t even nap.  My brain thought it was a stimulant.  I couldn’t think straight, walk straight or talk straight.  I’m just barely beginning to feel normally exhausted.  

I told my fibro doc what happened on the medication.  She gave me a new diagnosis: WEIRD.

Bob Blobfish sez: ". . . I p"
Bob Blobfish sez: “. . . She didn’t have to get THAT diagnosis from a doctor, just ask ANYONE who knows her . . .”

21 thoughts on “Wired and Weird – Two for the price of one

  1. You have been missed — as I was reading (before I reached the end), I thought, oh good, maybe if it works for JJ it’ll work for me … my brain and body needs the restorative sleep as well — but alas, back to square one! Wishing you better days ahead!! xoxo

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    1. Becca,
      It might work for you. The reaction I got was REALLY unusual, not even mentioned in side-effects and none of my doctors have had patients where it acted like a stimulant. It’s non-addictive and there’s an inexpensive generic so it might be worth your mention to your doctor?

      Liked by 1 person

  2. I, too, was worried something was wrong. So sorry you had another bad experience with meds. I know weird. I am one of them when it comes to meds and my Dr. does agree that I am. No fun when trying to gel help for a health problem. Never ending exhaustion is so awful and I hope you can get help soon. Take care. Cecelia

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    1. Cecelia,
      First, thank you so much for taking time to comment. Secondly, for signing your name so I knew who was commenting!!!!
      Yes, it’s been a bit of a rough go and sounds like your brain and mine are renegades when it comes to the status quo. That’s the good news and the bad news .. .
      much love always,
      judy

      Like

  3. I had noticed your silence and am relieved to see you back ‘on the job’. Bummer about the diagnosis and the lack of deep sleep. But I can see why you’d be reluctant to throw meds at it.

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  4. Glad to know you will survive.
    I’ve been on Topamax for a long time, for migraines. I can understand your doc’s ezpression. Glad they figured out it was messing with you.

    Hate it when the treatment makes you feel worse than before. Uck.

    Better soon…I hope.

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    1. Wendy,
      Topamax is primarily for migraines and seizures but apparently for the vast majority of people does promote deep sleep. Not only did it act like a stimulant Wendy I had a 3 day migraine on it! My brain is obviously not normal!
      So good to hear from you!

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  5. I have missed your blogs. I was going to email you this week but feel relieved with your update though I am not happy to hear you are experiencing. Will be praying 🙏for improvement soon for you Just hearing about the drug reaction sounds exhausting. Feel better my friend. Keep in touch.

    Sent from my iPhone Linda

    >

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  6. Sheesh – you should sign up to be an exploratory protocol of one – docs can poke and prod on their way to a diagnosis and solution. Seriously, you are fried and the docs should be fired. I often sleep better in weird places – lying on the sofa (maybe laying, I still get those two mixed up,) leaning over the computer pretending to write, standing in the kitchen hoping a meal will make itself, driving down the freeway. Lay me down in my bed and I’m suddenly wide awake no matter how tired.
    And yes, Judy, I did miss you. Feel better,please.

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    1. Shari B-P,
      SHEESH is EXACTLY the word I would have used if I hadn’t been so tired and could think better. I figured something was wrong when I couldn’t sleep because I can sleep ANYWHERE, ANYTIME, in ANY POSITION including a bed. That’s why it was so confusing when I found out I had a sleep disorder and my brain didn’t go into deep sleep. I typically lay my wittle head on a my pillow and wake up 9 hours later, then can take a 3 hour nap. The problem lies (lays?) in the fact I never feel rested SHEEEEEEEEEEEEESH!

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      1. Judy, it seems like your body is begging for sleep while your brain is saying, “No sleep today.” Typical two year old behavior. Have you been this way your entire life? Or did something trigger it? No more kidding, this is a very serious sleep disorder. I sincerely hope someone is able to figure this out.

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        1. Shari B-P,
          Actually I HAVE been this way my entire life. I don’t remember much about when I was little but I do remember the morning my mom woke me up to go to pre-school – it was dark and cold and I REFUSED to get out of bed. There is some solace in being two but sleep-deprived isn’t one of them!

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  7. I’ve taken Dopo–er, Topomax. Definitely didn’t keep me awake! Thyroid was a good idea. If that’s out of wack, you get tired. I’m sorry it didn’t work. Keep me updated, although I think my fatigue is a side affect of RA. No hope there.

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    1. Jacqui,
      Just read a research report on fatigue and auto-immune and Savella. After the Topomax I’m a bit hesitant to try anything for awhile and let my wittle brain relax a bit before I shock it again.

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      1. Sorry to hear about the problems. However you have to keep trying. I have been diagnosed with fibro, thyroid, adrenal fatigue, sleep apnea, psoriatic arthritis, etc. Savella helps the depression, lots of B vitamins helps the fatigue, a mask at night with the CPAP helps too! Sleep specialist said I have brain waves similar to one with Fibro…get that… it is when I accepted the diagnosis! Treat everything but most importantly take care of yourself and stay balanced in all that you do or you pay for it later! Feel better!

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        1. LaVerne,
          Thank you for commenting! Holey Moley, LaVerne, you’ve got MORE than your share of chronic conditions. I’m so glad you shared about taking Savella as I have lately just begun to consider it. Some new trials suggest it actually helps “clear up the brain goop” that is seemingly interfering with neuro-processing. So far, for me, nothing (C-pap, vitamins, meds etc) helps with the restorative sleep. I was diagnosed in 1996 so I will say that I have accepted the diagnosis but as I get older the fatigue gets more chronic and harder to push through. I can pretty much put the pain in the background but the constant exhaustion is a hard one.

          Thanks again for taking your time to share as it helps not just me but those who also read the blog.

          Liked by 1 person

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