Sunday, 28 May 2017

Low Grade Glioma - your symptoms

Hi everyone,

I'm wondering if those of you with LGG can describe your symptoms? I had a seizure in my sleep and nothing else. (Docs always ask me about the seizure and I can't even tell them about that.) I started taking Keppra (3000mg per day, since I was pregnant) and then started getting mild headaches. Now I'm 5 weeks postpartum and experiencing dry mouth, burning tongue, tenderness in my temples periodically, weakness in my knees and rapid weight loss. All of this could be pregnancy related or not. I keep wanting to call my NO to report everything but that seems silly. (I just saw him about 2 weeks ago and had a stable MRI on April 6.

So what do/did you experience? What should alarm me and what shouldn't? Can side effects to medication come on months after starting them?

Thank you.



  1. Diagnosed with LGG (astrocytoma) 2 years ago, following a seizure in my sleep (taking control over all of the left side of my body).
    Since then surgery in September 2015, then no symptoms for the following two months.
    Since then I believe my only symptoms is mild myoclonus. I would say I get some strange muscle contractions every once in a while (from every five days to every 3 weeks), only lasting under a minute every time.
    My tumor is right against my motor area, so that would be very different from others.
    In terms of cocktails I have been on a Ketogenic diet for the past 10 weeks, which - to me - seems to have slowed down the myoclonus symptoms a bit, and I take vitamin d, curcumin, glyco-x, 5-htp, + some phases where I also take ashwagandha, k2 vitamin and Bacopa Monnieri.
    It's mostly about the Ketogenic diet for me though.

    1. As for your initial question about what should alarm you and what should not, I tend to avoid basing my "fears" on what others might have felt... each case is so different and our brains can react in very different ways. So I mostly rely on published research for my cocktails... then the rest is all some info I gather as a bonus, not using it too much to guide my actions.
      BTW, I am "only" on 1000mg of Keppra per day.

    2. Thank you, Clement. I probably should have added I haven't had surgery and it's in my left frontal lobe.

  2. I've got LGG oligo, left rear parietal, so similar to Clement the tumor is in my motor control region. My seizure presentation is general speech and mouth control related. I'm also on 1000mg Keppra a day. That dosage is enough that I definitely notice side effects, in particular if I get lazy about taking it at the same time of day. Main side effect for me is agitation, irritability.

    3000mg seems a little high if you've only had a single seizure. Could ask NO about reducing it some. Was this a gran mal seizure, or a focal (partial)?

    Also there is some data indicating that Keppra causes drop in vit b6 levels. So try taking a vitamin supp.

    In general, yes, side effects can take a long time to develop.

  3. Mine was in right premotor cortex (frontal lobe, close to temporal lobe). I had some memory problems (for example I couldn't remember what I ate for lunch the day before) and some tension headaches in the back of my head (I dont know if those were related to the tumor). I was sent to MRI because doctor suspected Arnold - Chiari malformation, but it later turned out I have a tumor.

    Now my memory is OK (I can remember what I ate for lunch for the ~ 5 past days), but I feel I am very sensitive for weather and headaches if I am tired. After surgery I was taking 1000mg Keppra, even though I never had seizure. When I stopped I ocassionaly get a single twitch somewhere on a body few times a day.

  4. Thank you all.

    I take such a high Keppra dose because I was pregnant and you metabolise drugs more quickly while pregnant. We haven't decreased the dose yet because my NO and I are both concerned about seizures while carrying my newborn.

    I'll ask my ND to check my B6 levels. Thanks for that tip!