Cross-eyed once Depakote levels were bumped up

[skyfire322]

Boy oh boy, has it been ages! I miss all of you and I hope all is well! Things have been relatively quiet with me, with the occasional absence and TC but besides that, I've been doing great!

Anywho, I've noticed an increase of absence episodes the past few weeks and my epileptologist decided to increase the dosage of Depakote from 500mg to 1000mg. Obviously, she's weening me up from 500 to 750 for a week, then 750 to 1000. While it has only been three days, I've had a cross-eyed feeling and have been stumbling and weaving like a drunk person, to the point of nauseousness. I've never experienced this before.

Have any of you who take Depakote experienced something similar? If it helps, it primarily happens at work which has fluorescent lighting (always gives me headaches).

 

[Porkette]

Hi skyfire22,

I was on Depakote for many yrs. and when my Dr. increased the dosage it became toxic and this sounds like what you may
be going through. I felt like I was drunk and I couldn't even stand up on my own without holding onto something, I also had
double vision at times. You should call your Epileptologist immediately and let them know what's going on. I had to have the
drug level lowered and it took me about 3 days to get back to normal. Also if you notice any bruises on your body you may
have a low blood platelet level. I had to go off the Depakote because it lowered my blood platelet level do a danger point.
I hope things turn out for the better and in regards to the light the reason you may be getting headaches is because you may
be photosensitive to certain color lights or their brightness. I wish you the best of luck and May God Bless You!

Sue

 

[skyfire322]

Hi skyfire22,

I was on Depakote for many yrs. and when my Dr. increased the dosage it became toxic and this sounds like what you may
be going through. I felt like I was drunk and I couldn't even stand up on my own without holding onto something, I also had
double vision at times. You should call your Epileptologist immediately and let them know what's going on. I had to have the
drug level lowered and it took me about 3 days to get back to normal. Also if you notice any bruises on your body you may
have a low blood platelet level. I had to go off the Depakote because it lowered my blood platelet level do a danger point.
I hope things turn out for the better and in regards to the light the reason you may be getting headaches is because you may
be photosensitive to certain color lights or their brightness. I wish you the best of luck and May God Bless You!

Sue

Hi Sue, thanks for the insight! I've been on so many different medications and combos, and the Depakote and Lamictal has seriously been the best I've had. I did raise my eyebrow a bit when she wanted to raise it that much. I'll definitely be calling her on Monday and see what she says.

I'll follow up when I hear back.

 

[Porkette]

Hi skyfire323,

I wish you the best of luck when you speak with your Dr. Just like you I've been on many different seizure meds then my Epileptologist
did a DNA test on me and found out I was drug resistant to all seizure meds out on the market right now so I was put on the cbd
(medical marijuana) and I am amazed at how that has reduced my seizures to the lowest in my life. Good Luck and May God Bless You!

Sue

 

[skyfire322]

Thanks so much for the info and support, Sue! Unfortunately medical CBD can't be prescribed in the state I live in (they even have a five page report on why you shouldn't take CBD posted in every room (rolls eyes), but I have been taking a low dosage a little here and there which has helped not only with keeping my absence seizures at bay, but also helping me with my RLS.

 

[valeriedl]

Anywho, I've noticed an increase of absence episodes the past few weeks and my epileptologist decided to increase the dosage of Depakote from 500mg to 1000mg. Obviously, she's weening me up from 500 to 750 for a week, then 750 to 1000. While it has only been three days, I've had a cross-eyed feeling and have been stumbling and weaving like a drunk person, to the point of nauseousness. I've never experienced this before.

Hi skyfire22,

I was on Depakote for many yrs. and when my Dr. increased the dosage it became toxic and this sounds like what you may
be going through. I felt like I was drunk and I couldn't even stand up on my own without holding onto something, I also had
double vision at times. You should call your Epileptologist immediately and let them know what's going on.

I had double vision for almost 10 years. At first it wasn't bad at all, maybe only lasted a few minutes. I told my neuro about it but he didn't seem concerned. Over the years it got worse and happened more often. Sudden temperature changes, like being in the warm house then going out into freezing weather. It was usually worse in the winter than it was in the summer because of this. I had to lay down in the dark, usually with a pillow or blanket over my face to block out any light, for 15 minutes or longer.

About 4 months ago I woke up in the morning and had it right away. I got so sick because I couldn't see strait I was throwing up. I ended up in the hospital for 5 days. The first few days I had to keep my eyes shut or I'd get sick again. Someone had to feed me because I couldn't do it myself.

I was put on Levocarnitine and I only had one double vision episode since.

 

[Clovis]

I was on it several years ago and don't really remember a problem with dizziness but I did bruise very easily and my hair started falling out. I lost almost 1/3 of it by the time I was able to get off of it.

 

[skyfire322]

Thank you all for your replies! I heard back from my epileptologist today, and they told me to slowly increase from 500 to 750, then up to 1000. If things don't get better in a week, they'll want to see me. In regards to the bruising, I haven't noticed anything but my hair has gotten quite a bit thinner.

I'll be honest, besides the occasional absence and one TC, I have been perfectly fine with my current dosage. Although I keep stressing that its been more frequent because of stress, she gets a little passive aggressive and is a bit adamant to increase it. At this point, I'm probably going to go two hours away to Chicago to get a second opinion.

I'll keep everyone in the loop, and I really do appreciate the support!

 

[Porkette]

Hi skyfire322,

Just like you my hair got very thin and my neuro I had at the time started me out on 500 mg. a day then upped it to 1000 mg. a day and that
is when my blood platelet level went down hill and my blood pressure dropped to 80/60 but I felt fine. I also lost 70 lbs. in 4 months but the
drug can either make a person lose or gain weight as a side effect.
If I may ask have you ever noticed that you have more seizures in the fall and winter compared to the spring and summer? If you do you
are having "seasonal seizures" my Epileptologist told me this is another reason why I have more seizures in the fall and winter and it's do to
the lack of serotonin during this time of the season. I wish you the best of luck and I think you are playing it smart getting a 2nd opinion.
Wishing you only the best and May God Bless You,

Sue

 

[skyfire322]

If I may ask have you ever noticed that you have more seizures in the fall and winter compared to the spring and summer? If you do you
are having "seasonal seizures" my epileptologist told me this is another reason why I have more seizures in the fall and winter and it's do to
the lack of serotonin during this time of the season. I wish you the best of luck and I think you are playing it smart getting a 2nd opinion.
Wishing you only the best and May God Bless You,

Sue

Sue -- Thanks for the reply. I do seem to get a bit more depressed during the winter, I really haven't tracked it. I should do a bit more research and tracking! It's just annoying because my previous epileptolgist was great and wasn't a "pill pusher" (I should note that he was my 'second opinion' doctor back then), but now, it'd be a trip half way across the country and and my insurance wouldn't cover it. I feel a bit stuck, deflated, and frustrated at the moment (if that makes any sense). Everyone's support has really gotten me through, though!

-Eric

 

[Sabbo]

Hi, skyfire. I had tried Depakote for my complex partials, but was allergic to it. You mentioned that your hair is much thinner now. Hair loss is one of the listed side effects of Depakote. I think it's possibly a side effect of many of AEDs. I'm on Topamax/Topiramate--& it causes hair loss, too.

 

[Porkette]

Hi skyfire,

I was told to keep track of my seizure by my Epileptologist and that way they could possibly see a pattern in my seizures as
to what days of the month or what time of the day/night I had any seizures, if you aren't doing this just get a calendar and write
down what time you have the seizure and the type of seizure. Also make a note if you are sick or if there's a low pressure in the
weather this will help your Dr. a lot and they may see patterns in your seizures. When they saw the pattern in my seizures they
told me to take Diamox for 5 days before the seizure would happen I always had seizures the 3rd week of the month. Then they
saw I had many more seizures in the fall and winter and that's when they told me I was having seasonal seizures and I needed to
be around bright light each day to help reduce the seizures and it has helped me a lot.
I've had many different neuros and epileptologist who were pill pushers but after I had the DNA testing done and they found
out I was drug resistant they stopped pushing the meds. Just be firm with your Dr. and tell them you don't want a lot of meds
because often they will interact with each other and cause more seizures. Neurontin was the worst for me it caused me to have
absence status seizures where I would be out of it for 30 min. to 2 hr. and in turn the drug caused more brain damage.
I wish you only the best of luck and May God Bless You,
Sue

 

[Sabbo]

Its a good idea to record your seizures to see if there is some type of pattern. I've been recording when my seizures occur for a long time. I never noticed any patterns, but the record & descriptions help me when I'm at the doctor's office .

 

[valeriedl]

Its a good idea to record your seizures to see if there is some type of pattern. I've been recording when my seizures occur for a long time. I never noticed any patterns, but the record & descriptions help me when I'm at the doctor's office .

I have a small weekly notebook that I keep as sort of a diary. If I've done during the day, even if it's just going to the grocery store, I write it down. Something that I might have done the day or two before might have brought on a seizure. If I have a seizure I use it as a seizure diary. I write down as much as I know about the seizure - the time, what I did during it and if I had a headache after and anything else that I think might be important. I also keep track of any other dr appts I had, what fore and if I was given any sort of med.

When I go to my neuro type out the things pertaining to the seizures and the other drs. My neuro loves this, I think he gets excited and asks for my papers before I even have a chance to give them to him!

 

[Porkette]

Its a good idea to record your seizures to see if there is some type of pattern. I've been recording when my seizures occur for a long time. I never noticed any patterns, but the record & descriptions help me when I'm at the doctor's office .

Hi Folks,
Just like Val I also write down in my journal if there's a low pressure in the weather, or if I've been sick with a cold or virus along with any changes in meds that may have triggered the seizure. My Epileptologist told me it was very smart to do and I have to give him a copy of my seizure calendar/log each yr. and he has been able to see that 1-2 days before a low pressure I have a seizure along with when I have been sick with a cold or virus how that has triggered seizures for me. Here's wishing all of you only the best and May God Bless You!

Sue

 

[skyfire322]

I'll be honest, I used to keep a journal when things were real bad, but once things got a lot better, it kind of just fell by the wayside. I'm bringing it back though, for sure! Mine consists of time of day, what I was doing, where I was, what my symptoms were, and how long it lasted (if it was observed by one of my coworkers, I would ask them.)

Just an update. I finally heard back from the doctor, and they decided to keep my current dosage (500 and 500). That being said, if things stay the same or worsen, I'll need to give them a call so they can re-evaluate. Fingers crossed!

-Eric

 

[Sabbo]

I've had quite a few complex partials recently, which I've noted in my journal. Nobody witnessed many of them. I only know I did because I saw bruises on & noticed soreness in my body. I won't be seeing the neuro for a while, so these records will help a lot.

 

[skyfire322]

Hey all! Hope all is well and you're staying safe.

Just wanted to give you an update. After a long discussion with my actual neurologist (not the nurse practitioner), we agreed to drop my dosage of Depakote from 500 twice a day to 400 twice a day. Since we've done that, I've been doing much better!

 

[Nakamova]

That's awesome! Sometimes just a little tweak can make a big difference.

 

[Porkette]

Hi skyfire,

I'm glad to hear things are going better just like you when I was on Depakote my Dr. increased it to 500 mg. and I ended
up in the hospital after I had a blood test. I felt fine but come to find out the Depakote was eating up my blood platelets so
after that the drug was lowered. I wish you the best of luck and May God Bless You!

Sue