Does anyone know if intense keppra side effects are normal

Posted by annabcd @annabcd, Mar 6, 2023

This is about my husband. He started having seizure like episodes four months ago once or twice a month that lasted 5-20 minutes. After trying to convince doctors these weren't anxiety attacks they did an EEG which was interrupted by a seizure like episode. They immediately got him on Keppra without confirming epilepsy and since then he's been completely out of it, has memory loss, slurs his speech, uneven pupils sometimes and others he smells something burning, cough, panic, sees flashing lights and colors,loses contact with the environment and more. He has stopped taking it since Saturday morning and he's much more conscious but still had episodes mostly with his head hurting, panic, burning smell and getting super sleepy when this happens. Memory is getting better.

Does anyone know if all of these are normal as far as bad side effects of keppra go and if so when they will go away?

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Chris Gautier OR Santosha | @santosha | Mar 7, 2023

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

jdernburg | @jdernburg | Mar 8, 2023

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

Judy

mackfreeman | @mackfreeman | Mar 9, 2023

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.

nonydog | @nonydog | Mar 9, 2023

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

audo | @audo | Mar 10, 2023

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.