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Could sudden onset of midday sleepiness be flare?

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    Could sudden onset of midday sleepiness be flare?

    Hi! I've been browsing other posts on fatigue and haven't seen this answered (hopefully just didn't miss it). About 5 days ago, around 2:00 pm at my job I was suddenly overwhelmed with the most intense sleepiness. Having never experienced sudden midday sleepiness like that, I grabbed a soda thinking perhaps I hadn't eaten enough for lunch (healthy, I know ) Ten minutes or less later, I felt fine again. This happened again 2 days after that. But the 4th day, the sleepiness was even worse, which worried me.

    Went to PCP yesterday, he drew blood to check blood sugar (has always been normal), iron (already know my ferritin is low) thyroid, B12, Vit. D (already know is very low), and blood counts with electrolytes, etc. I won't get any of the test results until after the holiday weekend, but I hoped someone here might have some thoughts on this.

    Can this sudden onset be a MS flare? Also, why does it occur midday, not all day? The Dr. called this fatigue, but I thought fatigue was what I experience when it's hot outside and I'm just drained of energy overall. I'm just unnerved by the sudden appearance of this sleepiness. I'm worried about the impact on my job, as well. The dr. said the caffeine in the soda was probably what helped, so I might try tea next time? Not sure...

    Thank you for any input.

    #2
    Hi Sonya:
    Several different things could be causing your sleepiness, so it sounds like you'll have to wait for the lab test results to come back next week to get some clues.

    What you're experiencing is probably not caused by a flare because, by definition, the symptoms of a flare must last continuously for a minimum of 24 hours. Plus, the symptoms of a flare wouldn't be relieved 10 minutes later or by something as simple as one soda, whether it was the sugar or the caffeine.

    Also, sleepiness and fatigue aren't necessarily the same thing, so it may take more information to figure out what's really happening.

    Your blood sugar might have something to do with the sleepy episodes, considering that they occur at about the same amount of time after what is usually lunch time. And that might also take some more investigating.

    Back when I was in college, I would have episodes where I would get intensely sleepy about 90 minutes after eating breakfast or lunch. A couple of blood sugar tests came out normal, so my doctor ordered a 5-hour glucose tolerance test. As it turned out, my body was burning through the sugar from my meals too quickly. Instead of getting hours-long, sustained energy, I was going noticeably hypoglycemic only about 90 minutes after eating. Then I just crashed into sleepiness. I eliminated the simple-sugar meals I was eating and the problem resolved. But it took a glucose tolerance test to show what was happening. That might be something useful for you if your other testing doesn't show anything unusual.

    Sleep disturbances that go unnoticed also cause some people to get intensely sleepy later in the day. Those are sometimes helped by a dose of caffeine. That's something else your doctor can consider.

    It's important to note that sleepiness from sleep disturbances or hypoglycemia isn't the same thing as fatigue. Whatever is causing your episodes, I hope you get it figured out soon.

    Comment


      #3
      Thank you so much for your reply!! I will definitely mention the glucose tolerance test to my PCP if nothing unusual is found. As far as sleep disorders, Iíve never had a sleep study done. I know Iíve always had anxiety and insomnia. I looked up some info as I am a restless sleeper (my feet will wear through my sheet until it rips) and I do have some sleep-related things listed (lucid dreams which I love, and sleep paralysis with hallucinations and hypnagogic hallucinations which are terrifying).

      Interesting, I have experienced all of these issues since I was two years old and Iím not sure why after so many years they would suddenly give me this midday sleepiness. But I will mention this to my doctor if my labs donít reveal anything. Thank you again for some clarification on the fatigue vs. sleepiness and for giving me some ideas to pursue with my Dr.!

      Comment


        #4
        Too fatigued to function

        Hi everyone,I'm new on here and so glad that I found it. I was diagnosed 3/2016 with RRMS after years of various symptoms that never got addressed until I moved to a new state and explained what was going on to my new PCP. To make it short and sweet-MRI had obvious plaques and I was started on Copaxone about 2 months later.

        I am having memory issues, trouble finding my words and my critical thinking has suffered. These are fairly new in the last 2-3 months. I am an RN who was working from home but cannot work now due to all of this. My Neuro had me stop my Elavil and Topamax to make sure those weren't contributing to the memory stuff. She also started me on Provigil at that time. The Elavil helped my sleeping for years but now I'm back to not falling asleep at night and up every 2 hrs. I have just started having such severe fatigue and tiredness. I think the Provigil is preventing me from sleeping so I stopped it.

        I messaged my Neuro and am waiting to hear back due to the holiday and long weekend. Anyone else have problems with the Provigil type meds like this?Also, I got a call from her office about my recent Thoracic Spine MRI and I was told she wants to see me to discuss it. It has me freaking out and since I am out of state I have to wait another 2 weeks to see her. Any thoughts on these 2 issues being Progressive in nature? Thank you so much in advance for any thoughts anyone might have.Karen

        Comment


          #5
          Originally posted by BlueEyezRN View Post
          Hi everyone,I'm new on here and so glad that I found it. I was diagnosed 3/2016 with RRMS after years of various symptoms that never got addressed until I moved to a new state and explained what was going on to my new PCP. To make it short and sweet-MRI had obvious plaques and I was started on Copaxone about 2 months later.

          I am having memory issues, trouble finding my words and my critical thinking has suffered. These are fairly new in the last 2-3 months. I am an RN who was working from home but cannot work now due to all of this. My Neuro had me stop my Elavil and Topamax to make sure those weren't contributing to the memory stuff. She also started me on Provigil at that time. The Elavil helped my sleeping for years but now I'm back to not falling asleep at night and up every 2 hrs. I have just started having such severe fatigue and tiredness. I think the Provigil is preventing me from sleeping so I stopped it.

          I messaged my Neuro and am waiting to hear back due to the holiday and long weekend. Anyone else have problems with the Provigil type meds like this?Also, I got a call from her office about my recent Thoracic Spine MRI and I was told she wants to see me to discuss it. It has me freaking out and since I am out of state I have to wait another 2 weeks to see her. Any thoughts on these 2 issues being Progressive in nature? Thank you so much in advance for any thoughts anyone might have.Karen
          Hi Karen

          Welcome!

          Unfortunately, I think something like 80% of persons with MS suffer from fatigue, regardless of the course, RRMS or Progressive.

          I used Provigil for a while when I was still working, but other than keeping me awake, it didn't help my physical fatigue at all.

          As for thoracic spine MRI, I never had one - only brain and cervical spine.

          Hopefully you won't be worried for the next two weeks, as that won't help you in any way.

          I know it's easy to say don't worry, but so very difficult to keep our minds away from it!

          Well anyways, I hope you find some support here, as well as helpful insights and info.

          Wishing you the best!

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            When I was able to work, before going on disability, I always found that I would have a lapse of energy, almost sleepy, around 2:00 PM after eating lunch. I found that eating foods that were lower in sugar and carbs helped with sustaining my alertness and so forth. Also, I was tested for sleep apnea and began using a CPAP machine when I sleep. Those changes to my regimen have made a lot of difference to my regular standard MS fatigue!
            I also began taking 5000 iu's vitamin D capsules, daily. My blood levels have been above 50 for about a year and I think that has been helpful. Good luck

            Comment


              #7
              Hi Karen:
              Originally posted by BlueEyezRN View Post
              I have just started having such severe fatigue and tiredness. I think the Provigil is preventing me from sleeping so I stopped it. ... Anyone else have problems with the Provigil type meds like this?
              Sleep problems aren't uncommon with Provigil and other stimulants. When you think about it, the very purpose of stimulants is to keep a person active and possibly stimulate brain action that can focus thought. The purpose of Provigil is to keep people with narcolepsy and sleepiness due to sleep apnea and night shift work awake. So it's no surprise that stimulants can and do keep people awake at night when they'd rather be sleeping.

              Some people with MS are able to continue taking stimulant meds by figuring out the timing of when to take the last dose of the day so that it isn't so close to bedtime that it inhibits sleep. Have you tried working with the timing, say, taking the first dose first thing when you wake up and the second dose no later than 2 pm? Or taking only a morning dose? (When I was on Provigil, I took it only in the morning.) If you haven't, it's worth trying different timing to see if you can get the benefit of it before just stopping it and giving up altogether (and possibly prematurely).

              Originally posted by BlueEyezRN View Post
              I have just started having such severe fatigue and tiredness.
              Fatigue is common in MS, particularly the longer someone has had MS. Fatigue is common in auto-immune conditions in general, but also common in MS because, as the theory goes, it takes extra energy to power muscles, nerves and other tissues that aren't getting enough nerve stimulation -- like having to function in overdrive all the time.

              Fatigue in MS is a whole subject in itself. If you haven't read much about it, you can start by searching for "fatigue" at the website of the National Multiple Sclerosis Society, nmss.org.

              But just because you have fatigue and MS doesn't necessarily mean that all the fatigue is from MS. Has your PCP checked you for other conditions that can cause fatigue?

              My fatigue got amazingly better when I got my vitamin D level up to about 60-70 ng/mL. Vitamin D plays a significant role in MS. Your level should be up in that range for several reasons. When was your last vitamin D3 test and what was your result?

              Originally posted by BlueEyezRN View Post
              I am having memory issues, trouble finding my words and my critical thinking has suffered. ... My Neuro had me stop my Elavil and Topamax to make sure those weren't contributing to the memory stuff.
              That was a good call by your neuro to consider medication side effects. But after a person has been off a med for awhile and the symtom doesn't get better, and considering that it's less common for meds someone has been on without problems for a long time to suddenly cause side effects (although it can happen), then the point of suspicion gets passed and the person can most likely start the med again.

              But just as with fatigue, other things besides MS might be responsible for a new onset of cognitive issues. Low thyroid hormone levels and unstable or low sex hormones are also well known for causing brain fog. That applies to both men and women. In women, brain fog due to due to perimenopause or menopause is a common complaint. Have your hormone levels been checked since the cognitive and memory issues started? If not, that's a logical next step.

              Originally posted by BlueEyezRN View Post
              Any thoughts on these 2 issues being Progressive in nature?
              MS is a progressive disease, even with treatment. It's the nature of MS for symptoms to accumulate and worsen over time. The timing varies among different individuals.

              So yes, your symptoms may be worsening over time because you've had MS for awhile and it's the nature of MS for that to happen. But...
              1. There are other possible causes for your brain fog and fatigue, and they should be investigated and, if possible, treated with applicable meds and lifestyle changes.
              2. Some MS treatment meds are more effective than others at slowing progression of disability and brain atrophy.

              Some limited testing of Copaxone has shown that it isn't bad at slowing progression of disability and brain atrophy, but there are MS drugs that perform better. As far as reducing relapses and onset of new lesions, Copaxone is one of the least effective meds.

              You didn't tell us how may neurologists you've seen or how many MS meds you've tried. But since you were diagnosed only a little more than a year ago, it sounds like you're still seeing the first neurologist you were sent to and you've been only on Copaxone.

              Considering that you have developed new symptoms that could be due to accumulation of MS damage -- you did say that you'd been having various symptoms for years -- and you have a new spinal cord lesion, the obvious question is whether you should be on one of the meds with higher statistical effectiveness. A lot of MS specialists would say yes, and would question why you're on one of the least effective meds.

              So it sounds like it would really benefit you to have a serious discussion with your neurologist about whether you should be on a med with higher effectiveness. You might not want to take on the risks of Lemtrada, but unless there's some indication to the contrary, it sounds like you're a good candidate for Ocrevus and even Tysabri if you're a good candidate JCV-wise.

              And no matter how much you might like your neurologist, it doesn't necessarily mean that she's at the top of the game of MS knowledge. With a disease as potentially debilitating as MS, it's usually a good idea to get a second opinion from a neurologist who focuses their practice on MS (usually referred to as an MS specialist, although there is no official medical specialty in MS). The fresh outlook might give you deeper, more fully rounded information on which to base decisions and give consent. It's also a way to check by comparison how good your current neurologist is.

              The NMSS has a function on their website to help find an MS specialist in your area: http://www.nationalmssociety.org/Tre...ers-in-MS-Care. Select Neurologic Care for a neurologist and/or Centers for Comprehensive MS for multi-disciplinary centers.

              If you haven't adopted some lifestyle changes since your diagnosis, you might also want to consider that as well. Bodies stressed by MS can't keep up with a poor diet, ingestion of toxins, lack of movement, and lack of sleep.

              It sounds like you have some research to do and decisions to make (hopefully that will keep your mind off of freaking out ). Good luck, and please let us know what happens.

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