Tuesday, June 24, 2014

Off to NYC

I'm headed for my tenth immunotherapy shot right now. I'm a little nervous since I'm barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I've been dizzy, and frustrated. I'm sick of having to deal with seizures.

I feel like a prisoner in my own brain. You'd think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I've been isolated further. Instead of not being able to drive, now I'm trapped not only in my house, but deeper, worse, I'm trapped in my brain. I don't trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels? 

If you've read the blog from the beginning, you'll remember the times I tried anti-seizure meds. I've been on three before. Each time they made me violently depressed, not able to leave the bed. I didn't want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn't even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can't live like this. That's what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn't get seizures. Or at least it was a rarity. Not back before the tumor (that's impossible), but back when we lived at Densmore. We had a specific diet, and a specific lifestyle, that worked. No more crazy tumor diets. Dan and my parents have been adamant about me avoiding anti-seizure meds - they remember the effects. So I agreed once more that we could try diet and lifestyle one final time, but if it doesn't work, I'm trying more meds. No one understands (unless they've dealt with seizures) how isolating, and terrifying, and limiting they are. It's exhausting, not just for my brain or my body, but for my soul.

The meds are still scary, I don't support them fully, but I'm desperate. Just looking back into them is frightening. They can have side effects like infertility, or other issues which you wouldn't anticipate a correlation. More obvious issues include slower thinking time, memory issues, here's one link with information: http://m.neurology.org/content/69/22/E27.full.

For now, I'm back on track focusing mostly on seizures, not necessarily tumor prevention - although often they have similar treatments, two birds one stone. I kinda feel like I'm playing wack-a-mole right now, and all I want is to be able to live, to cook a meal, or go for a run with friends and not worry about being stuck and having a seizure. It's ridiculous, and I hate it. Just when we get great results about the tumor, the seizures flair up. Incredibly lame. 

As we talked, me mostly venting, Dan made 12 guidelines to get us back on track to emulate the Densmore days. Here they are in no particular order...

1. No processed sugar
2. Limited fruits (an apple a day, or berries in a smoothie)
3. No grains/legumes
4. Unlimited vegetables
5. Limited/moderate nuts/seeds
6. Lean meats (but only 10% protein daily)
7.  Regular nights in bed by 9:30 pm
8. 60 minutes of excercise daily (even if it's walking, or floor exercises at home. Doesn't have to be consecutive minutes.)
9. Limited dairy
10. Only decaf coffee, and that should be limited as a special occassion treat.
11 & 12. I can't remember right now.

We'll see how it goes. Essentially, it's just a guideline to live healthy, and happy, and it should get me back on a regular stable blood glucose (low BG is a trigger, which can often come after a spike), have more regular energy (excercise as a priority), and better rest (regular sleep schedule). You'd think I could just do this whole thing already, that if I just lived moderately, that it would all be fine. But I have some triggers that I need to isolate. I have to pinpoint the problems so that I can avoid the issues. Please wish me luck. I'm so tired of fighting, fighting the tumor and the seizures, but it's what I have to do. I won't give up. There has to be a way to succeed.


  1. Oh Jess- so hard to hear all that you are going through right now with seizures. I am so impressed that you have been able to stay off of the anti-seizure meds. I have been dealing with the same issues you have but am actually already on a pretty high dose of Keppra. I was really hoping at some point to reduce the Keppra but in the last 3 weeks or so have had my seizure activity start to increase for no apparent reason (usually I can figure out the trigger: fatigue, lack of sleep, stressful day at work or home, someone around me is ill, etc)- However, this time there appears to be nothing that would cause this sudden increase in seizures- usually 2-3 focal seizures per day when I had at least 3 months with nothing at all.

    I have been taking Temador since they discovered a recurrence in January this year, so finished my 5th round of that about 3 weeks ago. I will be going to have my blood test and regular (every 3 months) MRI this Thursday. I guess that is when we will see if it is tumor regrowth causing this increase in seizures, OR, if maybe the Temador is causing swelling due to dead brain cells, etc. OR, it could be none of the above and just the fact that the Keppra on its own is no longer working... I have had the same history as you in many ways- it tends to be that my seizures increase when I am getting good news about no new tumor growth, and when I am feeling the best and have no seizures, that is when I hear that my MRI has changed and there is growth... It can all just drive you to overthink everything and that is the one thing I would like to change. Just to STOP having to think about everything and determine if that "thing" could be causing this reaction. At any rate, I just wanted you to know that I completely support you and how you feel about the anti-seizure meds- do everything you can to try and manage the seizures. BUT- if you need to go on the meds, please allow yourself to do that as well. There are so many choices on this journey, but there are some points in time where the choices are narrowed and you may need to choose the side effects of the meds over continued seizures, which any NO will tell you aren't good for you either.. You are in my thoughts and prayers and I am inspired by you every time I read your blog. Take Care- Nikki

    1. Oh Nikki, damn it. I hate that you had that recurrence, and the confusion of months without seizures, then several a day. Yuck! AND you're on anti-seizure meds. How was the appointment? Is it tumor die-off?!? (I've been thinking of you, hoping, hoping.) Thank you for sharing; hearing your experience helps me not feel so isolated, or confused. You know what I've figured out over the past few weeks after this last seizure, is that I need to stop over-analyzing my food. The more I focus on a tumor diet, the more seizures I have. The more I restrict calories, the mores seizures I have. Is that true with you too? I also cut out caffeine. That seems to help. (Booo. Decaf only now.)

  2. Hi Jess, Sorry to hear about your struggles with seizures. Maybe you could ask about getting a presciption for memantine.



    Memantine is an Alzheimers disease drug that blocks NMDA receptors. NMDA receptors are glutamate receptors supposed to be responsible for glutamate-induced seizures. NMDA receptors can also be stimulated by 2-HG (the metabolite produced by mutant IDH1).

    Memantine is currently being tested in a trial (see the above link) for glioblastoma, along with metformin and mefloquine.

    It might be one of those "two birds with one stone" drugs that works against both glioma and seizure activity. Might be worth a try.

    All the best to you, whatever you decide.

    1. Sorry, I shouldn't recommend a drug without looking into side-effects first. The product monograph says this at the very end:

      "if you have previously experienced epileptic seizures, there is a possibility that Ebixa (memantine) may increase the chances of one occurring."

      I'm not sure what this is based on. I'm going to keep looking into it though, to see if it has any anti-seizure activity.

    2. Stephen, Thanks for the suggestion! I always like new ideas. I'm going to keep looking into memantine as an option. The good news is that last Friday I stopped doing any diet at all, and I feel great. I think I'm going to cut out the restricting of calories and foods, and see if I can mitigate the seizures that way. I'm naturally a healthy girl (exercise and a preference for nutritious food) so it might just be fine. Once I have these seizures under control, maybe I can add some more fun tumor fighting drugs. Just the thought makes me really excited!

  3. Would you consider adding a time for quiet meditation into your list ? and if vegetables are restricted to those 'above ground" ones only ? and nuts / seeds only if they were 'activated" ?

    1. YES! Absolutely. I forgot that it's on the list. I've been trying to do 15 minutes in the morning and afternoon - but I keep forgetting, so I'm going to set a timer, and just check-out. Thank you for reminding me of that! :) About to set up the timer right now....

  4. Good luck with your trip and the new diet! I am sure you will get past these seizures and back to your normal. I also like the suggestion of meditation. My sister is big about yoga and I think it has helped her in a lot of ways. Either way, I am glad to hear you are trying something new (or old) to try to get back on track. Best of luck!!

    1. Thanks Sheila! Your words resonated for the rest of the week, so I pulled out my old Bikram's Beginning Yoga book and have been trying my hand at some of the poses. I wish it was easier for me to get to a center, but at least I've got something. Dan's been laughing at me as I do it while he plays video games, but it's still very relaxing. It certainly gets my blood pumping! Thank you for the comment, it really helped.

  5. NEGU (Never ever give up)!!! All we can do is keep trying our best to conquer our problems. You are a warrior, and I know you will find a way. You have conquered the mountain, now it is about overcoming the hills. Charge on sweet Jess, let nothing get in your way, you got this!

    1. Thank you!!! I am a chameleon who is all about adapting to conquer things. A friend shared a great quote the other day, "Ride the horse in the direction it's going." I'm going to stop fighting against calorie restriction and various foods, since it seems to just cause more seizures anyway. Thank you for the boost!! I will charge on and figure this out :)

  6. I wrote you a long comment and somehow it got deleted. Please call me about the meds, I have a lot of experience with different kinds and I want to share something else with you. 310 925-2245


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