I am taking Lamical now 500mg per day which is 100 above normal I think. I went for 3 years without a seizure but would not have stopped without being certain of never having another which I did!
Evgenia said:
Kevin, may I ask you what is your Keppra dosage per day?
Thanks
kevin matthews said:I had gamma knife
I was on keppra for a year after my craniotomy, since I never had a seizure during the AVM and also after it was removed, within the year I was on it I was given EEGās then all was well so I was taken off. thank god, I felt like a zombieā¦
Youāve been lucky because you had a craniotomy. I had embo and Gamma Knife. And doctor says that after gamma the vein has a scar so itās better not to quit medicationā¦ smth like this
Nicole J Ricci said:
I was on keppra for a year after my craniotomy, since I never had a seizure during the AVM and also after it was removed, within the year I was on it I was given EEGās then all was well so I was taken off. thank god, I felt like a zombieā¦
lianneā¦ all i know of is dilantinā¦good luck!
hiā¦my avm is untreatable however ive been told to take dilantin for seizuresā¦although ive never had oneā¦hmmā¦im so confused and just dont know what to do! i need adviceā¦thank you for caring!
I think in your situation you should stay on medications
kathleen jubrey said:
hiā¦my avm is untreatable however ive been told to take dilantin for seizuresā¦although ive never had oneā¦hmmā¦im so confused and just dont know what to do! i need adviceā¦thank you for caring!
yup, I stoped taking dialantin about 18 month after my bleed and radiation. I thought every one was given seizure medās that had a stroke, ha, ha. The medās were just a percausion, because of the scar tisue created from the radiation; this can cause seizures. I had on going problems while taking dialantin and kept trying to convince the doctors it was making me very ill, finely my liver tests agreed; that I needed to stop taking dialantin. I was informed by the nero surgeon to state that I am allergic to dialantin and other drugs that are in the same family. I had a difficult time to breath, shortness of breath on going and seizure caused by the med. I was dropped to the lowest dose possible, but still told to take the medās. In the very beginning, I could not breath and when to emergence, just after leaving the hospital; after my radiation treatment. Celiacās I read are allergic to dialantin, just my luck that I learned about my allergy to Gluten. Life makes a lot more sence, now that I know what is going on with my body. I love to ask questions and to be fully informed. I have been throught a lot of complications from medās and treatments and I insist that I be informed fully. Why ask for your X on the dotted line, if you donāt know all the information. Yup! I have a edge cause by past experience, so I vote tell us the whole truth and let us truly decide.
Hi Evgenia
Iām with you on the med thing. As I mentioned to one other young lady I weened my self from Lamictal. I was on 1200 mil a day. All Docs Ive spoken with say that if given half a chance many times our body will repair it chemical malfunction on itās own. I went very very slowly when I cut back to give my body time and it worked. I strongly believe that with proper nutrition our body can almost completely heal itself. Notice I said almost. I do indeed occasionally have a very simple seizure. Not enough to fret about. Never loose consciousness and such. They are so mild you just get sick quicker. Listen carefully to your body if you go for it. Pay close attention to feeling and symptoms if any.
Drās many times are just covering there buts with meds because they donāt have a crystal ball and meds are all they know about prevention of anything and there has never yet been a med that cured anything. They are used to cover up the problem and buy time to possible allow our bodies to help themselves.
Enough coach.
Hi David,
Iām totaly agree with you about doctors. And itās good to hear that you cut off the dose of medications. I will try to do the same. My problem is that I drive a lot. I donāt wonāt to cose an accident.
David Brandon said:
Hi Evgenia
Iām with you on the med thingā¦
My son was on Keppra 500 mg 2xās a day for the past 18 months. It was a preventative for him because he had a large bleed from his AVM + removal. He still doesnāt have normal brain waves butā¦has never suffered from a seizure as of yet. Doctor decided itās time to give it a try without medication.We are two weeks into a 3 month process of weaning him off of it. He will decrease every two weeks and have an EEG every 4 weeks. If you really want to get off the medicine I strongly recommend having the doctor on board so you can be monitored closely. No sense in taking unnecessary chances with your health. I wish you lots of luck. Take Care,Marla
Hi Marla,
thanks for your advice. I asked ALL my doctors to help me with stopping taking Keppra, but nobody wants take a risk.
Marla said:
My son was on Keppra 500 mg 2xās a day for the past 18 months. It was a preventative for him because he had a large bleed from his AVM + removal. He still doesnāt have normal brain waves butā¦has never suffered from a seizure as of yet. Doctor decided itās time to give it a try without medication.We are two weeks into a 3 month process of weaning him off of it. He will decrease every two weeks and have an EEG every 4 weeks. If you really want to get off the medicine I strongly recommend having the doctor on board so you can be monitored closely. No sense in taking unnecessary chances with your health. I wish you lots of luck. Take Care,Marla
Andrew was put on seizure meds twice. Once after the intial bleed and after his crainiotomy. He never actually had a seizure, but at potentially critical times they had him on the meds as a preventative. Whatever you do definitely work with a doctor and do not stop the medicine abruptly. You need to wean off of it or it could cause you to have a seizure. Have you ever had a seizure?
I had a seizure once and that when my AVM was discovered. 3 years passed and Iām still on Keppra
Janice Brown (Andrewās Mom) said:
Andrew was put on seizure meds twice. Once after the intial bleed and after his crainiotomy. He never actually had a seizure, but at potentially critical times they had him on the meds as a preventative. Whatever you do definitely work with a doctor and do not stop the medicine abruptly. You need to wean off of it or it could cause you to have a seizure. Have you ever had a seizure?
Evgenia when I stopped taking my seizure meds, I was okay, but I was also scared, thinking that maybe I would have a seizure. I donāt ever remember having one anyway. The doctor said that they give the seizure med to people who have brain surgeries to prevent seizures, go figure. I was on so many different types of meds I canāt remember but a few. I do remember being on dilantin though. I think you should follow your doctors advice, the neurologist and your neurosurgeon should be the ones you should talk to about it.
Hi Eloise,
You are lucky your doctors told you to stop meds. What kind of treatments you have been through?
Eloise Scott said:
Evgenia when I stopped taking my seizure medsā¦
Hi Kat,
May I ask which part of the brain your husband had an AVM? And I assume he still has a scar from the GN and surgery.
I think it also depends on the location of the treated AVM.
Hi David,
You mentioned that you went very slow on giving up medication. Can you please describe how slow?
Would cutting from 750 per day to 500 for 10 days and 250 for 10 days and after that zero would be slow enough?
Hi! My husbandās AVM was in the temporal lobe, right behind his left ear. He does have a scar, but of course his hair covers it up completely. I hope you are well!
Best regards,
Katy
Thank you for your reply Kat!
I had an AVM in the same exact part of the brain, the difference is that the scar after the Gamma Knife is inside the brain and I guess since your husband received a surgery he only has the scar outside.
Yes, he did not have gamma knife! That was so long ago it seems now, but such scarey times! I really feel deeply for all of you who have had to go through this!