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Prolonged phenobarbital usage and connection with dementia?
Epilepsy & Seizures | Last Active: Apr 26, 2023 | Replies (23)Comment receiving replies
Hi @mythreeguys
It is so difficult to even imagine changing a medication routine that is working. They are finding more and more evidence of long term side effects everyday which leaves you with a very difficult decision. All medications come with risks and side effects. With that being said that leaves you with tough decision. Is the risk and side effects worth it. For me the memory issues were quickly evolving while I was on phenobarbital. I was put on it during my first and second pregnancies. It is much safer on the fetus. But by my 3rd year on it I was having a great deal of difficulty with memory loss, forgetfulness and breakthrough seizures. I was put on keppra to help with the breakthrough seizures and my docs weren’t convinced the memory was from the drug. But after a couple years with both drugs it only progressed and I developed severe depression, severe tremors (my hands were shaking all the time) and weight gain. But I know a lot of others tolerate Keppra very well. My doctors were willing and prepared to try something else but after my last Tonic colonic seizure which my very young children wittiness, I ended up going by ambulance to the hospital they tried to give me two antiepileptic drugs which caused a severe allergic reaction and I stopped breathing. The medications were Zanogran & Topiramate.
That’s when we decided to go through the Mayo Clinic Epilepsy Clinic.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Now I am only on one medication which the only side effect is sleepiness which lasts about an hour so I take my medication 1 hour before I have to get up for work sand at bedtime. No tremors, no seizures, and no more migraines. So far no long term side effects (12years) but if I get some I am very comfortable knowing this is the right drug for me and I will deal with one comes.
Has you Doctor checked you drug level in you blood? If you have lost any weight recently then they may just have to lower your dose of medication. When my levels were high then I use to feel drunk - off balance, memory fog, blurred vision. They would lower my dose and it would level out after about a week then I would be good again. Do you think that might be possible in your situation?
Praying for guidance!
Dawn
Replies to "Hi @mythreeguys It is so difficult to even imagine changing a medication routine that is working...."
I have been on Fina Barb since sixth grade when I developed my first seizure after having a gymnastics head injury earlier that day I was just out of it for a minute and was fine we walked away we were at a family outing at a big event so other than bumping my head I was out of it briefly but that evening going for dinner I started forgetting where I was and having that aura feeling so of course my parents been very scared called an ambulance and I got an EEG at the hospital and it was discovered I had epilepsy I am still on phenobarbital and the one and only time I switched back in the 80s when some new doctor recommended as when I had numerous seizures where normally I would be seizure free as long as I took my Fina Barb as directed it was 60 mg two in the morning and two at bedtime so honestly as long as people eat healthy don’t overdo it exercising get enough sleep and try to avoid stress which that’s impossible for me but the biggest thing is take medicine regularly and won’t have any seizures for me that worked however just turning 60 I also am very concerned about my memory now most people say it’s normal but I’m becoming concerned but I won’t change Fina Barb for anything I’ve had two great Neurologists I stay with for years and both suggested never go off of Fina Barb because they probably know I would have seizures again I know a girl that was at age 50 saw doctor switched medicine and then developed uncontrollable seizures they never could get it right so that also scared me and alarmed me too if it’s working stick with it that’s just my philosophy but to me nothing is worse than having a seizure you could really really put yourself in danger and then God forbid you’re behind the wheel could hurt other people honestly the Fina Barb works wonderful I’m grateful it doesn’t have a lot of side effects other than I’m tired a lot with low energy I always have been and I’m not great at Remembering things and I know schoolwork was always difficult however even as I faced possibly getting dementia it sure is work better than any seizures that you could even risk your life and die from so I am staying on my Fina Barb and that’s exactly what my doctors recommended as well that’s just my opinion so be safe and staying seizure free is my goal so that in itself makes the decision easy for me I would rather have a little memory loss
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Hello Dawn,you say you are on one med,what is the name of the med.I have been on keppra for six years it works like a statin on me having all kinds of muscle issues eating away at my tendons and very bad pains in legs.A lot of days I need crutchs to walk it hurts so bad.and the pain just comes and go's when ever