Sensory Ataxia in legs

[BuckeyeFan]

I have developed Sensory Ataxia in my lower legs. Not serious yet, but bothersome with balance. I have been on Dilantin (Phenytoin) for a very long time and that is probably the cause.

Does anyone else here have Ataxia of any type?

 

[Bernard]

I think my wife wrote the book on it. She was on Dilantin for over a decade before she switched off of it and I'm pretty sure it's the culprit in her case.

 

[gigi]

I have been on Dilantin for over 4 decades, and I just started having problems with this. I thought it was cramping, but guess not!

 

[Sabbo]

I was taking Dilantin from the late 1990's until the early 2000's. I took it alone, but for while my doctor added Neurontin. I don't know how it may eventually affect me. I had to switch to other AEDs because I began having complex partial seizures in addition to the simple partial seizures I'd always had.

Currently, I'm taking 500mg/Zonisamide & 200mg/Xcopri per day, but I still average 1-3 breakthroughs per month.

 

[gigi]

I’ve always been on the Dilantin by itself, I’m now wondering if I need to add another AED. I had a seizure last week, the anxiety afterwards is awful!

 

[BuckeyeFan]

I have been on Dilantin for over 4 decades, and I just started having problems with this. I thought it was cramping, but guess not!

Same here on the time (42 years). I am on 600 mg per day along with 800 mg of Lamictal (very high dosage). Except occasional auras, I have been mostly seizure free for 15+ years.
I did not start off with cramping. Mine was coordination issues. As I understand it, your boday naturally knows where your limbs are situated around you without optical input. I am losing that ability and need vision to stay balanced. Darkness makes it worse. Going down stairs where I can't see my feet, is probably the worse and I am very careful with that.
When they put a tuning fork on my ankle, I feel it touching me, but no vibration. I feel the vibration on my knee.

I’ve always been on the Dilantin by itself, I’m now wondering if I need to add another AED. I had a seizure last week, the anxiety afterwards is awful!

I was Dilantin only for about 25 years and still had occasional (but strong) seizures. Then my neuro added Keppra for 5 years, which I eventually had to leave because of emotional issues. Been on ever increasing dosages of Lamictal as an adjunt to the Dilantin for over ten years now. Good control.

 

[BuckeyeFan]

Same here on the time (42 years). I am on 600 mg per day along with 800 mg of Lamictal (very high dosage). Except occasional auras, I have been mostly seizure free for 15+ years.
I did not start off with cramping. Mine was coordination issues. As I understand it, your boday naturally knows where your limbs are situated around you without optical input. I am losing that ability and need vision to stay balanced. Darkness makes it worse. Going down stairs where I can't see my feet, is probably the worse and I am very careful with that.
When they put a tuning fork on my ankle, I feel it touching me, but no vibration. I feel the vibration on my knee.

I was Dilantin only for about 25 years and still had occasional (but strong) seizures. Then my neuro added Keppra for 5 years, which I eventually had to leave because of emotional issues. Been on ever increasing dosages of Lamictal as an adjunt to the Dilantin for over ten years now. Good control.

Cramping - More recently, I have been having a lot of issues with tendonitis in my achilles tendon. Physical Therapist says it is caused by my calves were always tense and knotted up, putting constant tension on the achilles. Through exersize, cupping, and needling, they are getting more relaxed and the tendonitis is getting better.
No idea if the constant tension is Dilantin related.

 

[Sabbo]

I do recall that while I was on Dilantin (& only had simple partials), my maximum dose was restricted to 340mg. If I took any amount greater than that, my head would begin to feel extremely heavy.

 

[gigi]

I do recall that while I was on Dilantin (& only had simple partials), my maximum dose was restricted to 340mg. If I took any amount greater than that, my head would begin to feel extremely heavy.

I am prescribed 300 mg a day, which puts my level around 10. Doctor told me to increase to 400 a day. That’s when I started getting the muscle twitches and the heavy head you are talking about. I cut back,and on Monday will see what he wants to do. I also got chapped lips, which went away when I decreased.

 

[Bernard]

I am prescribed 300 mg a day, which puts my level around 10. Doctor told me to increase to 400 a day. That’s when I started getting the muscle twitches and the heavy head you are talking about. I cut back,and on Monday will see what he wants to do. I also got chapped lips, which went away when I decreased.

If you were/are taking the full daily dose at one time, maybe you would do better splitting the dose up (1/2 morning, 1/2 night) or using an extended release formulation (if it exists).

 

[gigi]

If you were/are taking the full daily dose at one time, maybe you would do better splitting the dose up (1/2 morning, 1/2 night) or using an extended release formulation (if it exists).

Thanks! I will see what he would suggest. He may send me to a neurologist at this point. I have not had an assessment in years.

 

[Sabbo]

I've always seen a neurologist at least once a year. When I was taking certain medications, it was already set that I also needed to have monthly appointments for blood work. I'd often joke with them that they should just stick a cork in my arm.

 

[gigi]

I've always seen a neurologist at least once a year. When I was taking certain medications, it was already set that I also needed to have monthly appointments for blood work. I'd often joke with them that they should just stick a cork in my arm.

 

[gigi]

I have an appointment with a neurologist in January. I have had issues since my November seizure. I am tired of feeling tired and out of sorts. After the seizure I had lots of anxiety, that turned into depression.