Does anyone know if intense keppra side effects are normal?

Hi @ annabcd, Good Morning
I am very sorry to hear what your husband has been going through. I hope he gets better and finds a treatment suitable for his epilepsy that does not affect him so much.
From my epilepsy experience, side effects can be quite particular to each person. I have not taken Keppra but I had some of your husband's side-effects with Vimpat. Stopping those medications from one day to another can be quite dangerous. Do it with the doctor's supervision. In your place, I would look for an epileptologist and try to find out more about your husband's epilepsy.
Do not give up based on the experience of one medication. I know that some can have terrible side-effects and affect life terribly, but nowadays we thankfully have many other medications (AEDs), alternative medications (medical cannabis), and alternative treatments (diets, neuro helmets, etc.). One thing that has helped me much to find my treatment for my epilepsy was to study it (The Epilepsy Foundation was my main source of epilepsy study, they have a great website http://www.epilepsy.com).
I can understand very well your husband's feelings as well as yours. Since the beginning of my treatment in 2019, I many times did want just to stop those medications and throw them just out of the window, but thankfully my husband did not let me do it. Instead, we changed doctors many times, until we finally landed at an epileptologist address who treats me with respect and has found a treatment that respects my body and its limits.
Do not give up!!!! If I can be of any further help, please feel free to contact me privately as well.
My best wishes to both of you!
Santosha

Look up side effects of Keppra. These are apparently common but the WebMD site says call your doctor. There are alternatives.

Judy

Hi, Annabcd. You write that your husband had "seizure-like" episodes rather than just calling them seizures. I have "transient spells" and my neurologist thinks I have "cerebral amyloid antipathy" but wants to do an EEG because he suspects some kind of seizure is also a possible diagnosis. Loud music can send me into a spell. I have been on Keppra since Jan 12. It is really strange how every day on Keppra I have different reactions. At first I felt cheerful and calm but after a month that went away. Now I have muscle aches and don't know if it is related. I am "out of it" as you describe some days and feel very inwardly focused, not wanting to socialize. At first I had more and worse spells on Keppra but now they are much better. Getting the dose right has proved difficult. Good luck and thank you for supporting your husband so well.I know how difficult it is when you don't know if the medicine is making someone ill instead of helping.

Keppra caused my brother intense, but different, side effects. Made him very short-tempered and angry. To the extent that he almost lost friends.

I took keppra for years & had no idea how much it was affecting me until I went off of it. Definitely check in with your Dr & see if there's another med he can try. It's a lot of trial & error with medications.

Hello, I am wondering if anyone has any suggestions on how to help deal with side effects of Keppra? My daughter was diagnosed with seizure disorder over a year ago. She was put on Keppra at 500mg twice a day. 4 months later she had another seizure the doctors upped her to 750mg twice a day. Since then she has been seizure free for over a year now. But she has been battling fatigue due to the medication. Some days are better than others, she said at times she feels like a zombie. I’m just wondering if anyone has experience this and if there was a way to counter act the side effect.Thank youLisa

I had to try another med (Vimpat generic) instead of Keppra. I simply could not function with the fatigue. The term “zombie” accurately describes how I felt. It is strange how different meds affect people differently, but the Keppra just wasn’t for me. I know changing meds can make someone apprehensive, but talk to physician and discuss this. Good bless and I pray your daughter finds help.

Thank you for your advice, yes she is a lot apprehensive about changing meds. She has gone a year with no seizures so she doesn’t want to move backwards and start all over again. She has an appointment with a new doctor in early April

Hi @lyhay1973
The process of getting the medication that best fits your daughter is a fine-tuned process that might require some patience and time. I had experienced 5 AED medications before finding the one that is the best for me and my epilepsy. As @baa has well mentioned, changing medications might get us apprehensive, but better to try other medications than to live with this "zombie" side-effect (BTW, I had this with Vimpat, everyone reacts differently to those medications). Ah one important thing, the doctor that has finally found a medication that best suits me is nowadays my epileptologist. I have observed a great difference in the treatment of my epilepsy by an epileptologist versus a neurologist.
All the best to your daughter!
Santosha

Thank you for your advice. The 1st and only doctor we have seen so far has been a neurologist. I wasn’t a fan of her to begin with. I just wasn’t happy with her demeanor and her quick response to dismiss any treatment she didn’t prescribe meds for. We did bring up the extreme fatigue we were just dismissed and said that’s okay it’s the only side effect you are having. My daughter has some anxiety nothing crazy was a gymnast we used CBD to help with the recovery of her extreme workout regimen, and it help with her anxiety especially during competition time. The doctor wanted us to stop using that, as she didn’t like it and wanted to put my daughter on more medications. My oldest daughter who is a nurse, met the 1st neurologist for my youngest daughter last appointment with her. We found the 1st neurologist wasn’t a very good at treating seizure disorders. She never ordered blood work ever not even after she put my daughter on medications. After her 2nd Seizure we found that the 500mg was too low as the ER ran blood work. I had to demand the Dr order follow up blood with to make sure the 750mg was in good range. At her last check up the neurologist didn’t want to run blood work again. Even though our primary care Dr said it should be done every 6 months. The neurologist told my daughter it wasn’t her job to order the blood work and monitor the range. My oldest daughter at that point told the Neurologist she was an ER Nurse and it was 100% her job to order blood work to watch the range of her patient she put on medication. The 2nd round of blood work was finally ordered only because we had to fight for that as well. It just hasn’t been a good process for us so far. We are thankful and happy my youngest daughter hasn’t had a seizure in over a year. We see a new neurologist in April and I would like to help my daughter with this fatigue she has and not feel like a zombie and struggle through college and work.