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[Lbell45]

Hi,
Im a 53 year old male who suffered from a CVA back in June 2010,, due to a very rare codition known as an AV fistula within the brain. Basically, this is a weak connection between the artery and vein which over time can rupture and cause a hemmorage. This is what occurred in my case. The result was total paralysis of my left side from the neck on down. Fortunately, i suffered no congenitive damage or speech related isuues.
Since the accident I have recovered enough to be walking, playing a bit of golf, and commuting daily into and out of NYC. Other than some persistent weakness on the left side and a "drop foot" problem I am doing well.
Back in May 2011 I underwent cyberknife surgery(form of radiation) to basically kill (cauterize) the damaged artery. Since that time I have experienced what my nuerologists have termed myclonic seizures.
So that is a quick summary of my condition, but I joined this forum in hopes someone might be able to shed some light on my seizure experiences.
Typically, they occur every 4-8 weeks and start with a stiffness in my weak leg and back, and then my arm and hand. What follows is a period of tremors or muscle spasms in the leg and arm; coupled with a shortness of breath and a very anxious feeling. The entire process can last anywhere from 10- 45 minutes and leaves me exhausted for several days. More recently I have felt some strange mental sensations just after the physical part, which again include a very light headed feeling, and sometimes a feeling of sinking deep into a hole. I have never experienced loss of consciousness.

Please I welcome any and all insight.

Im am currently taking Lyrica as my only medicine.
Best,

Lbell45

 

[Nakamova]

Hi Lbell45, welcome to CWE!

Is there anything that seems to trigger your symptoms? You might want to keep a seizure diary to see if you can identify any factors that might be playing a role. Make note of the time of day the symptoms occur, as well as other factors in the 48 hours preceding -- things like how much sleep you've had, what and when you've eaten, how hard you've exercised, etc.

Have you asked your docs about medication to control the spasms?

Best,
Nakamova

 

[Lbell45]

Nakamova,
Yes i had been on Keppra but had difficulty w the side effects. Im now taking Lyrica which i suppose helps to minimize the seizures.
My biggest question to the forum is do my symptoms seem typical for a seizure as opposed to something else, i.e. muscle spasms?
Lbell45

 

[Nakamova]

The lightheadedness and the sinking feeling suggest something more seizure-like, rather than simply muscle spasms. Did the Keppra help control them (despite the side-effects)? If so, then that's a sign that the symptoms are seizure-related.

 

[Lbell45]

I suppose they did, but hard to say because I still got them. Anyway Dr. switched me to Lyrica about 100mgs/day which isnt much but this is all very new to me. I was a triathlete prior to my CVA now I have trouble walking and feel dizzy most of the time.
Appt. to see another Neurolgist here in NYC on Jan 4th. He specializes in E.
thanks for your help.

 

[Malla]

I am sorry to hear about your problems, but happy you're recovering Did the stiffness (myoclonic jerks) start when you started taking Lyrica, or did you have that before Lyrica?

 

[Lbell45]

Yes and no. My first experience was severe limb stiffness and almost a panic type attack. Now since taking Lyrica or Keppra I still have the original symptoms plus shortness of breadth,and muscle tremors.
Could it be more due to the meds?
thanks

 

[Malla]

I had more shortness of breath with Lyrica... also wondered if the stiffness of limbs was due to the meds. But I dare not say. I stopped taking lyrica three days ago, and I have not experienced shortness of breath since. I have however experienced limbstiffness, but not in the degree as when I was on Lyrica. My original seizures are ofcourse still there and I have become more photosensitive to light, but otherwise the same. To me it feels like Lyrica reduced some of my symptoms and added a few others ha ha..... but don't take my word for it, it is wise to talk it over with your doctor. Maybe write a journal to track the symptoms. Ty

 

[Lbell45]

Thanks much..Ill keep you posted after my dr. Appt.

 

[Rag]

First, welcome to the forum! It seems like you've had a tough time with your health lately, I do hope things improve in future.

More recently I have felt some strange mental sensations just after the physical part, which again include a very light headed feeling, and sometimes a feeling of sinking deep into a hole. I have never experienced loss of consciousness.

This certainly sounds like it could be some kind of partial seizure in itself to me, I agree with Nakamova. I was a bit surprised that you seemed to be saying you *only* had myoclonic symptoms before describing this. It's certainly possible the anxiety is a seizure symptom rather than something triggered by the seizure, too, though it's hard to know this when anxiety is also a quite natural reaction to being out of control of your body.