Does anyone stopped taking medications (which prevent seizures) after the AVM was gone? I don’t want to take Keppra any more, and one of my doctors said I can stop, but another strongly recomended me not to. What should I do???
Hi Evgenia what kind of doctor said and what kind said no ?
i think you should go and get another opinion from a neuro…have you or do you ever suffer seizures? if you do how long has it been since your last?
Hi Pauline,
The doctor who said I can stop taking Keppra: Aneurysms, Arteriovenous Malformations, Chiari Malformations, Hydrocephalus, Neuro-oncology, Primary Brain Tumors, Skeletal Dysplasia, Skull Base Tumors, Spine Surgery, Stereotactic Functional Surgery and Tumor Biopsy, Stereotactic Radiosurgery.
Another doctor, who recomended to continue Keppra: Intraoperative Monitoring, Seizure Disorders (Adult).
pauline horsley said:
Hi Evgenia what kind of doctor said and what kind said no ?
3 years ago I had a seizure, that’s how my AVM was discovered. Then I had 3 embo and 1 gamma knife.
After gamma, I had swelling, but later it subsided.
Alicia said:
i think you should go and get another opinion from a neuro…have you or do you ever suffer seizures? if you do how long has it been since your last?
Hi- I guess it depends on how the seizures could affect your quality of life compared to the side effects of Keppra. For example, does taking Keppra allow you to drive or function normally?
Ultimately, Evgenia, its up to you, not your doctor or us. Perhaps you could get some additional info on the repercussions of ending that med?
Evgenia, Seems you need a tie breaker…A third opinion perhaps may help to clarify the pros and cons here ? Have you compiled your records, scans and reports ? They should all be on a handy little cd in your posession. And what of your list of reasons for desiring to be off meds ? Do the meds interfere with your ability to function as you want to ? Are your seizures active even with meds ? Do you have a neurologist or neurosurgeon that you see on a regular basis ?
Sorry, too many questions… I hope you get out there and find your answers for your best care. You must be the finder of fact for yourself Evgenia and I hope you recieve the information and guidance you deserve. Be good to you. Take care of you.
Yeah, I drive, swim, and so on… It’s just bothers me that I’m on medications. Also, it’s not good for liver. And you are right Brian that it’s up to me wether to stop it or not. Just wanted to know if somebody quite medicine.
Brian said:
Hi- I guess it depends on how the seizures could affect your quality of life compared to the side effects of Keppra. For example, does taking Keppra allow you to drive or function normally?
Ultimately, Evgenia, its up to you, not your doctor or us. Perhaps you could get some additional info on the repercussions of ending that med?
Yes, I have all my records on CD, and I have to visit my doctor once a year, and my seizures are not active. My reason of quiting is that maybe there is no point of being on Keppra any more.
marianne elizondo said:
Evgenia, Seems you need a tie breaker…
HI EYGENIA,
i was talking to my neuro about coming off tegrotol because i havn’t had a seizure for about 7 months and he told me i would have to be at least seizure free for 3 years before he would consider taking me off the meds…how long have you been seizure free?
Hi Alicia,
I had a seizure only once, and it was 3 years and 2 months ago.
That’s what my doctor wrote me 6 months ago:
"The patient called, asking if she could stop taking Keppra. She thought she could since the AVM had been embolized.
I told her that she has recently had a seizure, and that seizures don’t some from the AVM itself, but from the brain tissue around the AVM. Since she had the seizure she should stay on medication."
Not sure why your doctor would say “she has recently had a seizure” if you had a seizure 3 years ago. If I am reading your post correctly. You had one seizure before the AVM as discovered, the AVM is now obliterated and you have not had a seizure since? My husband went through something similiar in that he had one seizure, an embolization and crainiotomy and was also on Keppra. His seizure doctor told him to stay on Keppra for 2 years but his neurosurgeon told him 6 months. He stayed on 6 months from the time of the crainiotomy and then whined himself off. That was 1.5 years ago and he has not had a seziure since. It seems odd to be that anyone is recommending staying on Keppra for you at this point based on the information you provied her.
Hi Kat,
Yes, I had seizure 3 years ago and only once, and my AVM is now obliterated. And I had appointment with my doctor 6 moths ago when he told me I must continue Keppra.
I have a question, when your husband quted Keppra, could he drive and do other activities normaly?
Thanks
Kat said:
Not sure why your doctor would say
Yes, however he did not have a drivers license when he had the seizure (he is from another country and had not taken the test) he actually got his drivers license about 8 months after being off the Keppra. He said he had a lot more energy after being off Keppra. The neurosurgeon was completely confident that it was okay to get off the Keppra. Perhaps you could tell your neurosurgeon what the other Doctor said and ask him again what he thinks. My impression of my husbands doctor who gave him the Keppra was that he knew very little about AVM’s and thus was only considerating on the seizure disorder which was not really a disorder since he only had one once before surgery.
I had gamma knife and seizures but then went 3 years seizure free but stayed on the meds that controlled the siezures
I was told I would have to take meds all the time because although the AVM may be sealed some of the surrounding brain is affected by the radiotherapy process, so I will still be likely to have seizures without medication.
I have liver tests every 6 months and have no problems so it does not bother me taking them but I would get more advice before stopping them.
Kevin, may I ask you what is your Keppra dosage per day?
Thanks
kevin matthews said:
I had gamma knife
that makes more sense, my husband did not have radiation and thus probably did not need to stay on the meds. as long as a person who does have radition does.
Agree it’s up to you, just be well-informed about what happens if you stop talking the medication. And how to stop taking it. I’m not familiar with Keppra, but I’ve been on prednisone which is dangerous to stop cold-turkey. Let your doctor know what you are planning on doing just in case Keppra is like this.
Thanks to ALL OF YOU for advices!!!