Keppra withdrawal or the start of decline?

Hi Sazlou89

Sounds like things are pretty tough for both of you at the mo

Uncertainty doesn't help does it.

I have a GBM in my temporal lobe and am currently also taking 1500mg twice daily of Keppra, in addition to Lamotrigine.

It is always difficult to say exactly what is causing certain symptoms and withdrawal of Keppra could be contributing but I think the common symptom people get whilst reducing/stopping Keppra is an increase in seizure frequency.

The symptoms you describe can be caused by seizures, especially repeated ones in close succession  I'd see how it goes with the dose change over the next few days and keep in touch with your GP/ Mac nurse if your husband's symptoms are not improving or worsening.

I hope things become clearer for you both.

Best wishes, Simon

Thanks for your reply, things are tough right now. What makes it harder is my husband is only 33, I'm 27 and we have 3 young kids who are gunna lose their dad.

The withdrawal symptoms are almost identical to worsening symptoms. Had the community nurse come out yesterday to check blood sugar levels and did a urine check just to be on the safe side, both were ok. Hospice nurse has suggested upping his dexamethasone from 1mg (which he's currently on) to 4mg but gp said that was a bit of a jump and didn't want to increase them unless the headaches become debilitating.

My husband's tumour is on the left partial lobe, was on 1500 mg of keppra twice a day following his craineotomy as had some seizures while still in hospital. Following the start of seizures again in December the desision was made to slowly come off keppra while slowly going onto lamotrogine, had made it to 250mg twice a day along side 100mg of lamotrogine in the morning and 125mg in the evening but because of this the keppra was upped to 500mg twice a day and 125mg of lamotrogine twice a day with that increasing to 150mg over the next couple of weeks. He also keeps feeling hot and cold, shivery but temperature within normal range and has woken this morning with a blocked nose. I'm still hoping it's all down to messing with the tablets or even a viral infection.

If it is things worsening then it's happened very quickly as last Friday my husband went to the gym and then took our puppy for a half hour walk on the beach.

I know exactly how you are feeling. My husband is 39 and I'm 35. We have 2 young children under 5. Life is tough at the moment and I'm scared like you as my kids are going to lose their dad. I just hope and pray it's not for a long time. Xx

Hi

I was on Phenytoin 300mg a day at night before bed. I still had some focal seizures and changed to Levetriracetam-Lupin gradually. When i had both meds i had no seizures at all but when they stopped the Phenytoin all together the seizures came back slightly. I have a fantastic Epilepsy nurse who promised to sort me out. I have bouts of being absolutely freezing or roastiing and having to strip off. I thought it was the after effects of chemo/radio

I blame EVERYTHING on the tumour, sore toe sore belly sore ear its always the tumour in my mind but so far I'm ok. I get what seems to be the start of a cold but it doesn't develop.

Ive had some 'new' things develop seizure wise and always think its back but so far I'm ok

xxxx

Well since Monday my husband has been making improvements again, headaches have stopped and he is starting to get on his feet again, even if it is very wobbly steps.
Our gp feels that as it's taken so long for my husband to get over the resent bad spell it might be time to consider the tumour is progressing. We plan on remaining positive that it's not as like I said, my husband has been making progress again.
Hope everyone is as well as possible

So having asked our gp to see if we can have scan to see how things were going with my husband, we have today received an appointment for a scan. My husband has been wanting one as he doesn't like not knowing what's going on and as he had been getting stronger despite being told he had months to live he wonders if things could of improved with his tumour (I know that it doesn't happen very often, but there is always the possibility). My only worry is that following the rough 10 days my hubby had, would it still be worth having the scan? He is stil doing well and managed to go to the gym yesterday, although the exercise bike was a problem as his right leg kept twitching as if he had a trapped nerve. His mood goes up and down about everything which i understand why, I'm the same at times and not going through what he's going through. He's feeling down today as wants pizza but he seems to have a seizure the day after he has a high amount of carbs and he isn't willing to cut something out for one day so he can have a pizza. Sorry for the rant but my head is in a huge muddle

I would say have the scan, i would like a scan every day but have to have 3 monthly lol

Beginning to feel like 2 steps forward, 20 steps back...hubby had a small seizure Friday afternoon having had a good day with going to the gym and shopping for paint and other bits for our garden. Normally after a seizure he has a bit of problems with speech and  walking but both were fine. I suggested he have a nap but he declined saying he felt ok. Whilst I was cooking dinner for the family he started to have a panic attack, breathing was shallow and fast and he felt really anxious. I phoned his mum as he kept saying he wanted her, his parents live about 20 mins away but she said they would be down straight away. He started to panic again so I arranged my brother to come grab the kids and take them to McDonald's and I'd be in touch shortly. Then husband started to panic again so I called 999, told the operator about his gbm and then said it was like he was having a panic attack. Before I knew it an ambulance was blue lighted to us (first time that's happened, even with his first seizure that didn't happen). As the crew got out their equipment, hubbys parents arrived. Hubby kept getting confused, crying out in pain and struggling with his breathing. All the paramedics seemed to care about was that because his obs were ok they couldn't offer any help (felt like a huge waste of time calling them). After around 4 hours of hubby first panicking, he'd calmed down and was pretty much back to normal. Around midnight as we went to bed he admitted he had a mild headache and reluctantly took some paracetamol and went to sleep. Around 3:30 he woke crying in pain over his headache. I persuaded him to have some codine and he went back to sleep, only to wake again at 5 in pain again. Fast forward a couple of hours and we finally managed to get an out of hours gp to come out to him. She said to increase his steroids to 4mg, although to take 6mg then and to speak to our gp Monday morning. Throughout yesterday hubby kept struggling with his breathing and inbetween would complain about pain in his right arm with pins and needles. Just before 7pm he had another small seizure, was ok straight after and was even able to talk without slurring during the seizure. We went to bed and he said he had a mild headache so took some paracetamol and went to sleep, although we had to sleep with a lamp on as he started panicking when I turned it off. He woke a few times complaining of pain in his right arm, although he's described it as burning pins and needles more than a pain. And throughout his last bout of "dodgyness", right up to now he is also having problems staying cool in bed. Nobody seems too bothered about that apart from me.

Sorry about the rant...again. Sometimes feel like I'm all alone even with support from family and friends

I know what you mean that you feel alone. We had some problems with hubby it's not even been a week since he was last rushed into hospital. He fell out of bed yesterday morning and couldn't get up so I phoned all the numbers I have for his care and they sent an ambulance (I would of rang one but I keep being told not to ring anymore ambulance's). He went into ICU and then they said he could come home later all he's doing at the moment is sleeping and doesn't really know what is going on around him. I've rang all the numbers again but can't get in touch with anyone and I don't know how I'm going to look after him. Hopefully can get some answers tomorrow (always happens at the weekend). I hope they can make your husband comfortable as I hope for mine.

Take care

Wendy.

Sugar is a NO NO!!! Low carbs diet is what he need! No no to pizza completely!!! 

I've had Epilepsy for 30 years and it wasn't until a year ago that I realized how much carbs and sugar has been a huge part of the trigger. I also suffer from panic Attack b a side effect of keepra. 

Please encourage your husband to go on a ketogenic diet..... Perhaps modified keto diet.   

Also may be try magnesium. Ask specialist for advice. 

I'm sorry to hear about your struggles. Xc