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Females: Hormonal influences on symptoms.

I've experienced difficult menses since my teenage years. One of the more frustrating symptoms was feeling so sleepy for 2-3 days around the start of my period. Since I wasn't diagnosed with Narcolepsy Type I until my early 40's, there was no reason to suspect any connections. I had a hysterectomy this past February, leaving ovaries intact, and recently realized I'm still having 2-3 days of extreme sleepiness, as well as some of the other monthly symptoms. The big difference is that throughout the years of hormonal changes, the one symptom that worsened was the sleepiness. It's no joke to sleep 3 days in a row, only waking up to urinate once a day, maybe sip some water, and back to sleep. Has anyone else experienced something similar to this? Is this "normal" with narcolepsy?

  1. My narcolepsy really changes with my cycle. I wish there was a narcolepsy app to track symptoms with my cycle!

    1. That's a good idea, . Could you just keep notes on a calendar? It might help you predict some patterns and plan better for the worst days. - Lori (Team Member)

  2. After menopause, I no longer suffered from migraine headaches that begun in my early teens! Unfortunately, my sleep has suffered.Myself and our daughter

    1. What a relief that must have been to eliminate the migraines, . I wish you didn't have to trade off less pain for less quality sleep though. Has your doctor been of any help? Thinking of you. - Lori (Team Member)

  3. My narcolepsy was managed by medication until I had to have uterine ablation. Afterward I had premenopausal symptoms and the hormonal changes caused my Narcolepsy symptoms to increase dramatically. I experience the same 3 day sleeping around the time I have period symptoms despite no longer having an actual period. It also made my brain fog worse several days before and after. Parle Vu, which is a narcolepsy symptom(the opposite of deja Vu, where you suddenly don't know something that you know that you've always known) got much worse. Normally, I would just be unable to recall the name of something familiar like a remote control. After the ablation it was much worse. One day I came home from work and grabbed a pack of hotdogs out of my fridge for my kids. I looked at the package and had no idea how to cook them. Hours later when it came back to me and I realized how many ways there were to prepare hotdogs I was actually frightened that something was really wrong.
    I've been learning to cope with and accept the changes without fear after learning that Narcolepsy is greatly affected by the hormonal changes of both puberty and menopause. I was so happy to read that once the transition is complete women reported that symptoms subsided and went back to just normal narcolepsy. So there is light at the end of the tunnel.
    I've read many ways to balance hormones during pre- menopause but it's really important to talk to your sleep specialist before taking any supplements because they could interact with medication.
    It's so frustrating to think you finally know the nature of your narcolepsy and then experience something that changes the nature of it. It's having to learn to cope all over again.
    Thank you for bringing this up. I think it's important for women to know this phase of narcolepsy is so difficult and debilitating but it's not permanent.

    1. You reminded me the brain fog gets worse, also. I didn't know what parle vu was, so now I have a name for that symptom, too. Thank you for the info!

    2. This is all really helpful, . That experience must have been so unsettling for you. It is good to know symptoms improved after menopause and that there is hope. Great advice about consulting with a doctor before taking anything at all that impacts hormone levels. Thanks for chiming in. Best of all wishes. - Lori (Team Member)

  4. That must be horribly frustrating and debilitating, . Women usually go into early menopause soon after having the uterus removed. Has that happened for you yet? I wonder if the reduction in hormones after menopause will make a difference. It will be interesting to see whether other in the community have experienced this or have input. Gentle hugs. - Lori (Team Member)

    1. I actually went through changes is a weird way, due to other health issues, and benzodiazapine withdrawals. According to blood work levels, I was pre-menopausal, post-menopausal, peri-menopausal, menopausal, and back to pre-menopausal, all within a 8 year time frame. I do know that various symptoms worsened or improved at different times. I just hadn't connected any narcolepsy symptoms to hormonal changes until recently. I believe this topic is very important to discuss, being that narcolepsy has so many unknown factors yet.

    2. What a crazy time you've had, . I hope you settle into menopause for good soon and that the symptoms are alleviated. Warmly, Lori (Team Member)

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