My 61-year-old, otherwise healthy, husband had a major seizure at 4:am Tuesday, think Grand Mal. This was the first time anything like this has happened, very frightening. Greg was rushed to our local hospital and released withing 4 hours. He had a CAT scan and it looks like he has a small brain bleed. Greg's neuro-onc didn't seem overly concerned. She has him back on Keppra 750mg twice a day. His short-term memory is even shorter if that's possible. His walk is even more hesitant. We're waiting for the results of the second CAT scan, taken yesterday morning. We're back at UCLA next Wednesday for his routine MRI, blood and visit with neuro-onc. Has anyone had a similar experience? What does it mean to have a brain bleed, even a minor one? Do you recover from that or is the "new normal" reset?
Newest response from Greg's neuro-onc: "I don't think so. These symptoms are quite typical of a bleed but as long as there is no worsening of the bleed, which sounds like there's not, he'll get better in about 3-6 months. But he may feel better if we give a short burst of steroids for 4-5 days, 4 mg twice a day, before going back down to 4 mg."
Additional question: About a month ago, we stopped (cold turkey) almost all complementary meds, including chemo to give Greg a break. We also stopped cbd-thc sub-lingual spray. He continued to take curcumin+, metformin and just a couple of other meds but not the 25+ vitamins/supplements that have been part of his cocktail since September. Could that have something to do with the seizure/brain bleed?
My daughter had two sets of seizures a week apart just a few weeks ago. Some of the short-term memory loss could be postictal...my daughter had that and pronounced right sided weakness (her tumor is in her left occipital lobe) that improved over the next couple weeks. The CT scans after the seizures didn't show any bleeds, but her MRI just 10 days later showed microbleeds that weren't there in January.
ReplyDeleteI had a bleed. They put in a drain and waited for it to clear. It didn't, so they put in a shunt that drains to my stomach. It took awhile, but I gradually made it back. Grace and peace to you.
ReplyDeleteI had one with enough pressure to cause a midline shift. They called it a subdural hematoma. The symptom that caused me to go to the hospital was speech problems. A craniotomy was performed to stop the bleeding and clear out the fluids. I didn't suffer any deficits.
ReplyDeleteAGM,
ReplyDeleteWhen you say you stopped everything cold turkey, was your husband on any anti-seizure medicine at that time? You said that the NO "put him back on Keppra". The CBD component of the sublingual spray also serves as anti-seizure medication.
This may be the first time since diagnosis that he has been completely off all anti-seizure medications. That's the only connection to the seizure/brain bleed that I can think of.
Best, Kendall.
Kendall, He was not on Keppra since diagnosis, mainly the month of June 2015. There might be a link, that when we stopped most comp. medicine, including cbd-thc, this might have had something to do with the seizure. Shocking how massive the seizure was. He has been back on the spray, and as I said, slowly introducing him back to some of the other comp. meds/supplements. I think I'll need Stephen's help to prioritize the ones to add back on. Thanks for your input.
DeleteWe had the reverse experience- Mom was having lots of seizures, multiple per week and we added in the THC/CBD and other natural medicines and they have all but ceased to happen and when they do it is very very mild. From hearing long term survivors testimonials, they never stop taking all meds. It is a lifelong protocol, worth the inconvenience in our opinion. The only difference is if it is 'therapeutic' or 'maintenence' regimen. Wish you good healing.
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