Jump to content
helplinedonate
mmdspouse

Seizure-like attacks after DBS

Recommended Posts

Do you see many patients who have gained a substantial improvement in speech after undergoing speech therapy to address the diminished voice post-DBS?

Share this post


Link to post
Share on other sites

Dr Okun

 

This is not the first reference I have seen in the forum of episodes of dramatic shaking occurring near sleep...or at complete rest. I have had these episodes for severalmonthsand they are increasing in strength and frequency. I now have them nearly once per day.

 

.. I have not had DBS. Three neuros have said they are stress related...however, I have had a thorough neurompsych assessment at an MDS clinic, ...and an assessment by 2 pyschologists and one psychiatrist who all say I do not have psychological,problems that warrant the seizure like episodes.

 

I recently had a sleep study. I am nervous that once more I will be told the episodes are psychogenic ....how much more do I need to do to have doctors consider another cause for these episodes.....especially when I am reading on forums and medical abstract that these episodes are not foreign to PD?

 

Not only am I frustrated, but I AM getting anxious of the increasing degree of shaking that now involves breathing (gasping) and heart rate/blood pressure. I have no history of panic attacks , yet my MDS and others keep returning to psychogenic origins for lack of a dx.

 

Advice?

Share this post


Link to post
Share on other sites

One practical suggestion is to take more sinemet and to take sinemet at night if these episodes occur and see if that is helpful.

 

I have seen this from wearing off.

 

Also a few of my patients put a Rotigotine patch on before bedtime and these resolve.

 

Not sure if this is helpful but an idea for you and your doc.

Share this post


Link to post
Share on other sites

Thanks for your suggestion, Doctor, but more importantly, I appreciate your genuine response...it validates my symptoms. Actually, I notice that it is always at wearing off time...coupled with complete relaxation. I had a two hour deep tissue massage by an experienced technician..I noted it was the first time in ten years my mind was quiet and my body was quiet. That told me two things: a. It IS possible to control mental energy without drugs. b. The seizure type episodes appear with total relaxation.

 

When I arose from the table after the massage, I went into exaggerated tremors ...even though I was mid term between dosages. It was the first time the episode occurred while I was standing. The tremors increased after I got home into a "storm." That evening I had the worst episode ever. The incident confirmed to me there is a distinct correlation between relaxation and the exagerrated tremors.

 

I have thought to go to an independent lab and have my blood levels of l dopa checked when I am experiencing the "storms." I am concerned, I may actually have the condition of dependent dystonia....and I am in "withdrawal" when coming to the end of the rx cycle. I am taking 5 50/200 CR over 24 hr period...exactly on time....but it seems to be a high dosage ..yet.still have break throughs......plus the exagerrated tremors.....is that a possibility?

 

When I get the results of the sleep study, I intend to follow up with some one who believes the tremors are not psychogenic...as they are increasing in frequency and severity.

 

Thank you for donating time and effort in our behalf. We appreciate you providing a safe harbor for us to share difficult questions.

Share this post


Link to post
Share on other sites

I know this is an old thread, but it seems appropriate to post in this one.  I had DBS surgery in JAN, got an infection in Feb, and had it removed. Unfortunately, I had 3 back-to-back seizures from the infection within about 15 min. I was given Keppra in the hospital and given a prescription to take 2x day.  (1200 MG).

 

My daughter has epilepsy, but I don't.  I remember nothing of that daytime incident and lost some memory of the following day.  A week after getting home, I had what seemed real to me, but I will call it a nightmare.   To back up, I usually take it 10PM and 0630 AM. SO, I woke up at 5 AM and went back to sleep.  As soon as I went back to sleep or laid down, a very uncomfortable feeling came over me and I could feel my body shaking/convulsing.   I don't recall much more.  Two weeks later, the same time, the same happened.  Then nothing for months.  I scheduled a re-implant surgery and the next morning, I have the same thing at 4 AM after getting up for a moment.  I was trying to fight it, but I gave in.  The next morning, I have what I KNOW was a dream about a seizure.  Am I having seizures still?  My wife is used to me jerking and acting out because of PD issues, but she did hear me moan at the 4 AM moment I mentioned.  Other times she was not present.  I am concerned I may be going into surgery risking a seizure or several.  I am still on Keppra.  My wife told me it was impossible to remember anything about seizures.    Please advise!

 

 

Share this post


Link to post
Share on other sites

First, sorry for the delay as some messages got lost when we upgraded the server and software.

Anytime there are periods where you may be feeling funny or have loss of awareness immediately after a DBS surgery it could be seizure and in many cases an EEG may be needed, a workup and possibly a drug therapy.  Infection or blood touching the brain can induce seizures after DBS but in many cases they resolve.  What you describe may or may not be seizures.

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×