I was referred to a Neurologist for mysterious spasms/jerks in my right jaw and on my first appointment she said it was probably just anxiety but might be focal seizures, and put me on Depakote 500 mg. My next appointment, I reported that the drug had no effect, still getting several contractions per hour. She then changed my DX to "probable" seizures for no reason and wanted to increase my dose. I refused. I go for an EEG and MRI soon. They say she is too quick to leap to conclusions before doing tests and is just wanting to put me on something.

I am getting a bit suspicious about this neuro for several reasons. A few of my friends and family say she doesn't know what she's talking about, and I have not had any other symptoms. Everything I can find about myoclonic seizures just doesn't fit the bill - they're supposed to start earlier (my Sx started at age 28), be bilateral (mine are only on the right), occur more in the morning (mine are even all day and night), etc. I am so confused and one friend says I need a second opinion even if I have to pay OOP for the whole thing! What's worse is she told me even if my (48 hour ambulatory!) EEG comes back normal , she wants me taking more Depakote!! Does this sound suspect to you folks here?

Hi ncole1,

Welcome to the forum. If you are having myoclonic sz. these sz. happen when you first wake up or when you go to bed at night. I've had them in the past and I found that the only drug that stopped them was vimpat. If I may ask have you had a sleep study done. My Epileptologist ordered a sleeps study for me and found out I was having sz. 1-2 hrs. before waking up in the morning but I never realized it.

Your Dr. needs to do a PET and SPECT scan on you to find out what's going on in your brain. I also have bilateral sz. and often the damage is to deep in the brain for an e.e.g. or MRI to show up.

To find the correct sz. med tell your neuro to do a DNA test on you. They will have to take a few tubes of blood and use a q-tip and wipe the inside of your mouth. All of that is sent to the lab and the Dr. can see your body chemistry along with the amount of enzymes in your liver and match all of that up to the best seizures med with the least side effect. Try taking vitamin B12 1000 mcg. once a day the B12 has greatly reduced my sz. because it calms the nerves. I wish you the best of luck and May God Bless You!
Sue

Ambulatory EEG is scheduled soon. Is this what you mean?

You seem to tell this to virtually everybody here on this forum, almost indiscriminately. No offense, but the most appropriate tests will very from one person to another, you realize this, right?

It is true that an EEG only picks up what is near the outer surface, but an MRI should get anything in the whole brain, right?

I am skeptical of nutritional supplements, they seem to have no effect, including B12. Believe me, if a simple home remedy could do it like this, I wouldn't have gone to all this trouble in the first place!

A sleep study is not the same as the EEG you have scheduled. Sleep study would be where they video you sleeping, you'd have EEG like setup (but often with fewer leads). Lots of people with apnea have seizures so it is something to know about. Just read an article on medscape today touching on this (originally from a cleveland clinic blog)
http://www.medscape.com/viewarticle/852735 ps - sure that the ambulatory EEG would catch seizures if they are setup for different times but sleep study is more, not sure it would be recommended to all but it is something I've considered for my child in the past.

Sue does tell everyone to get SPECT, not something that is going to happen but it would be cool if the option were more available, as well as DTI or MEG. She also mentions a DNA test - she really means a liver enzyme test as lots of older AEDs are broken down in the liver so knowing that could matter for some people and some AEDs, but isn't true for a lot of the recent AEDs. My sister can't shout the benefits of probiotics enough either, lots of people like to promote what really helped them and some are more objective /scientific when they do it and others sound farther out there.

Regarding MRI - it doesn't see everything - damage/scarring can be missed or if there, can be misinterpreted. But there are also different powered machines so it can be different if you were in a 3T or 1.5T machine - the 7T machines are super rare but see more. For big problems, low powered machines are going to see it, for the equivalent of the pea that bothers the princess' back, need a better powered machine or some other technique. The epilepsy protocol MRIs at our hospital are only done with the 3T machine, but they use the 1.5T machine for other stuff.

Lots of epilepsy doctors do suggest certain supplements - taking keppra? They'll often recommend B6. There is a note fixed to all screens in the neurology dept we visit to make sure all epilepsy patients have enough vitamin D. Gluten free diets may be enough to stop one type of patient's seizures - seriously. And some catch alls - like magnesium, super popular for a variety of ailments that are hard to pinpoint. For many patients, it probably doesn't apply. I noted my child has fewer seizures in the summer - and now I know seasonal seizures is actually something reported in research, go figure. Long term use of AEDs can mess with absorption of certain things so that is something else to pay attention to.

Since the both of you think I'm so dumb I will get out of here. I was just trying to help you out and I've had 2 brain surgeries and both the PET and SPECT scan show a lot more detail than a e.e.g. or a video e.e.g.

Sue

I don't think you are dumb, Sue. I have definitely learned things from you. But SPECT/PET are not commonly offered. Did you have those prior to surgery being considered?

Bumping up to get back on track..
Please be considerate of all members that take time to offer support.
It is your option to take what you want and ignore what you don't want.
But negative comments are not supportive to anyone.

Thank you

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