Epilepsy medication side effects - hair loss and weight gain

@baa
Is your drowsiness gone after the switch to lacosamide?
When I was very active on epilepsy forums, the two main complaints regarding meds were drowsiness and balance issues In fact, I don’t remember anyone who didn’t have one or both of those symptoms. Of course not all the meds available today were available then. I believe only about a third of the people taking lacosamide have drowsiness so hopefully you’re in that bunch.
Stay alert,
Jake

I do not have drowsiness with the Lacosamide; however there is a balance issue so I am very careful with that. One other issue is upon turning too swiftly I sometimes think I am seeing shadows. (As if something is dashing by) Sounds a little nuts but it is the med.

Hi @jakedduck1

First of all, Happy New Year!

As to how to get the subtitles in this beautiful video:
- Go to the footer of this video where you can raise the volume of the video, play and stop the video, etc.
- More on the center-right side of the video, there is a settings button. Click on it and activate the subtitles.
- Then choose the button "translate automatically" and choose English.

Hope it works. If you have any difficulties, let me know.

Have a lovely day!
Santosha

Hi @baac

First of all, have a very happy and healthy New Year!

I advise you to talk to your neurologist, he is the one that can best evaluate if there is any danger of you being alone at night. Take your daughter along to this appointment.

Have a lovely day!
Santosha

@baa
Of course I agree with @santosha about you and your daughter seeing the Neurologist regarding safety issues. The problem is many Neurologists don’t openly discuss the problems associated with Epilepsy, some doctors have admitted they don’t mention certain rare conditions because they don’t want to scare or feel the patient may not understand.
Ask about the possibility of Status Epilepticus and S.U.D.E.P. (Sudden Unexplained Death in Epilepsy.) These are both rare conditions. Ask what would happen if Status were to strike and you were alone. It likely wouldn't matter with SUDEP but who knows. Admittedly, none of this will probably ever happen.
I mention asking about S.U.D.E.P. because your seizures are generalized tonic clonic seizures, and they are also nocturnal. Depending on how many you have in a given period of time your risk is either increased or decreased. I’m not trying to scare you by telling you any of this. I just believe every epilepsy patient has a right to know. However regardless of what patients are told it’s not a guarantee. I was told I would have seizures until the day I die and my parents were called to the hospital many many times saying if you want to see your son again you need to come now. Well at age 59 my seizures for whatever reason stopped unless I didn’t take my medicine, of course and obviously, I never died any of the times my parents were called to the hospital. So basically all I’m saying is whatever your doctor says doesn’t mean they’re right especially with the unpredictability of a seizure disorder.
Because of the severity of my epilepsy, I lived with my parents, my entire life until they both passed. I have been living on my own since November 2019. A roommate should be moving in with me shortly. I have a long history of status epilepticas, and if I were to have an episode of Status and I was alone, well sayonara to me.
The problem with seizures is the longer they last the less likely they will stop on their own. My first episode of status epilepticus I was in a coma for eight months. When I came out, I had no memory and couldn’t do or recognize the most basic of things. They say it’s rare but I have had many. Known people who have had it, others who have died. just because something is rare doesn’t mean it doesn’t happen. No doctor ever told us it was a possibility.
My own personal opinion is that people with Epilepsy may face many dangers depending on various factors. As far as your daughter, moving in with you, where it me, I would feel safer.
I’m sure you already know about not taking a bath at least not alone. Countless people have drowned in the bathtub during a seizure and so it’s recommended to only take a shower. However, people have drowned in the shower as well. They have also had seizures in the shower and fallen and hit the faucet and knocked it to the hot side, and been severely burned or injured In falls. We shouldn't cook using front burners. The majority of the time I use the microwave.
As far as having nocturnal seizures are concerned, there are bed alarms and monitors so someone else can hear you and come and hopefully rouse you in case it's S.U.D.E.P.
You might ask about an anti-suffocation pillow. As long as the status quo remains complications will most likely remain low.
Sorry for going on & on.
Best of luck,
Jake

Thank you so very much for talking about these realities. I am aware of SUDEP (actually think of it every night at bedtime). My daughter has read about it also. If she had not signed an apartment lease for the building next door to me, she wouldn’t have moved. We have done some research into monitors that we could use but seem to be price-prohibitive. If you have any recommendations please let me know. She did go with me to last neuro appt but you are correct - doc did not go into anything realistic. I will make sure he doesn’t do that next time. Again, I so appreciate your honesty as that is what I need right now. Much appreciated and bless you!

To add, I do hope your room-mate situation is successful and after all you have been through with this condition, pray for you and good health -

@santosha
I can’t get the subtitles.
Oh well.
Thanks anyway,
Jake

Hi @baa, Goord Morning

Reading the messages between you and @jakedduck1, seizure dog is something that has come to my mind.

I myself have been considering this option. I have complex partial seizures and after some of them, I feel very confused, with difficulty talking. Thankfully, I have never had a seizure while walking around in the neighborhood. As I do not drive anymore, I do everything on foot nowadays: supermarket, pharmacy, Pilates, laundry, etc. A seizure dog would give me more security in those situations. I just did not adopt this option yet, as I and my husband live in an apartment that would be too small for a dog such as a Golden Retriever. But we have been considering moving to another place so as to have a seizure dog.

I very much agree with @jakedduck1 comments. It took me a while to find an epileptologist with whom I could have open talks. With a previous doctor, I felt very much imprisoned. He advised me not to do anything outside the home alone, always together with my husband. He also said I could not enjoy swimming in a pool and entering the sea, or riding a bike, even together with my husband. He exaggerated for my situation and I felt so limited and insecure! But with the chance of doctors and the help of my neuropsychologist, I could overcome those fears and have a more normal life again.

I wish you a nice day and stay positive!
Santosha

Hi @jakedduck1

I am sorry to hear that.

I have translated parts of this video for you. Here it comes:

An anthropologist was studying the habits and customs of an African tribe. At the end of his work, he proposed a game for the children of the region. He placed a basket full of sweets under a tree and proposed a race, telling the children that whoever arrived first, would take the basket. The children lined up ready to run and when they were ready to run, the anthropologist said go. At this time, all the children joined hands and ran together to the tree and took the basket together and celebrated together. The anthropologist looked curiously at that situation and one of the children said UBUNTU. How could one of us be happy if all the others were going to be sad?
UBUNTU is a word that represents an ancient African philosophy that means: I am who I am, because we are all we. A person with UBUNTU is aware that he or she is affected when a similar one is affected. He or she knows the world is not an island and he or she needs others to be himself or herself. UBUNTU talks about basic respect for others, UBUNTU is compassion, sharing, empathy. In other words, people need people to be people.

Ubuntu to all of us in 2023!

Have a nice day!
Santosha