New- Do I Belong Here Somewhere?

[rjc0704]

Hi Everyone -
I am looking to give/get support / advice / knowledge for msyelf, and for my husband who has recently started having seizures at the age of 38.

His first seizure was unwitnessed in April, when our foster son found him unconscious in his truck. He had soild himself, was lathargic, and was confused. He went to a walk in clinc who did tests and found nothing. They said potentially dehydration.

Since June, he has been having multiple seizures a week, even multiple seizures a day. Sometimes he seizes and shakes, other times he tenses up. Sometimes he loses consiousness, sometimes not. They put him on Kepra and have been increasing dosage weekly. They told us at the hospital that his MRI was normal. However, a good friend of mine works there, read his report and told me it said it was adnormal. Why would they do this????

Saturday, I witnessed 3 seizures within 30 minutes. I panicked and thought he had a stroke. One side of his face (his mouth and eye) was drooping and he couldn't talk. I was told this was Todd's paralysis - not uncommon after a seizure. So, he is in the hopsital for the 3rd time. The nurses witnessed and recorded two seizures on video EEG yesterday...one bad enough to wet himself. To our surprise, he Neuro specialist told us today that the EEG was normal! [/B]How does that happen? Does that most likely mean PNES? Are there other tests we should be asking about?

Any advice or pushes in the right direction appreciated! Take care!

 

[Nakamova]

Hi rjc0704, welcome!

I'm sorry for what you and your husband are going through. Unfortunately, diagnosis can often be a long and winding road. Many hospital neurologists are not epilepsy specialists, and even those who are can vary widely in quality and responsiveness.

The lack of a positive EEG does not rule out epilepsy; many seizures originate too deep in the brain to show up. The MRI evaluation needs to be cleared up right away -- call and ask the hospital for a detailed report on the MRI. If one isn't forthcoming, ask for the test results to be forwarded to you directly or to another physician for a second opinion. If your husband hasn't been evaluated for vascular or cardiac issues, he should be.

Has the neurologist given you any feedback on a possible diagnosis? The symptoms certainly sound neurological in origin. When will your husband be at the target dose of Keppra? Does it seem to be helping at all? If so, that's one possible indication of an epilepsy diagnosis. If it doesn't seem to be helping, don't despair -- not everyone responds to seizure meds in the same way and it can take awhile (and a lot of patience) to find the right med/dose.

Don't be afraid to be pushy with the doctors about getting your questions answered. It can be a frustrating process, but remember that the doctors are accountable to you, and you should never leave an appointment feeling confused by anything you've been told.

I hope things improve ASAP for you and your husband. Keep us posted.

Best,
Nakamova

 

[BigWill]

That sounds terrible! Sorry to hear of the problems you are having. I cant believe you are having so much trouble with the doctors. Especially after the MRI and EEG, on top of all the seizures he has been having!

I had one seizure, went and saw a neurologist (no EEG, no MRI) and he said I would probably have another seizure. Had another one four months later and he told me I had epilepsy. I dont see how you are having this much trouble with them! I hope you and your husband find something out. If the doctors you are seeing wont help, find another one!

 

[valeriedl]

I would defently find a different neurologist. Is it possible for you to find one who has an office that is not related to the hospital? It may help finding someone who deals specifically with neurology and knows alot about it. I'm not sure how much the ones at the hospital know in depth.

 

[RobinN]

You need to get your questions answered. Keep yourself emotionally steady though, because there is nothing that turns off those in the medical world more than unsteady caregivers. I am thinking they might even flag the file (not sure... just a guess from experience)

Keep digging until you find the answers that you need that address your husbands specific situation. There is one thing that I learned and that not all methods are suitable for each case, as we are all individuals, with unique situations.

My daughter had over 50+ seizures and more when she was ON meds. Now that she is med free and seizure free... I am told to just continue doing what I am doing. Many have no more answers except to offer another drug. We have gone the alternative route, which for many is a rogue approach. To them no scientific studies means it is not worth looking in to. To me, anecdotal evidence is all I have needed to help my daughter. We use a combination of nutritional changes, vitamins and minerals for brain and body health, and she did about a year of neurofeedback. She has currently been 8 months seizure free.

 

[rjc0704]

UPDATE - PNES or BS???
:hello: Everyone - Kind thanks for all the wonderful responses and advice. MUCH MUCH appreciated!

Nakamova / Valeriedl- Thanks for the advice. I will order the medical records - especially given the seemingly mis-information about the MRI. The last time I took him to the ER, the doctor said, "it looks like the MRI diagnosed a potential mini-stroke." We were told that they had to have someone else look at it and they said it was just a defect in the pic.

I think we will seek a 2nd opinion. There is just sooo much to learn it's overwhelming! Seems the internet can be a blessing or a curse!
We did have an initial consult with a Epip neo specialist, affliated with the same hospital. We were not told what the target dosage would be.

BigWill - Thanks for your empathy. Sorry to hear about your seizures. I do hope that treatment will work and you will be seizure free forever!

RobinN - Thanks for the advice. I have been very kind and patient and hope not to get any marks on my hubby's chart! I must say though, the last ER Neuro lectured me not to bring him in every time he has a seizure. I was a bit shocked...as we are new to this, he had back to back to back seizures, didn't know where he was, had a horrible headache and looked paralyzed on one side of his face. Thanks for opening my eyes to alternative routes...I agree the evidence can sometimes speak for itself! I'm so happy your daughter has been seizure-free and fingers crossed it continues.

UPDATE How disheartening..my husband called from the hospital and said the Neuro specialist who has been so nice has suddenly turned into a very rude jerk a*s and was out right mean to him - and said that he has PNES. He discontinued all meds and told him to see a psych.

I don't understand! This same doc said he had Myocronic seizures in his sleep (I have witnessed this for several years and didn't know they were a form of seizures). He also told us that he suspected PNES due to stress, but that with PNES people don't lose consciousness and soil themselves, or have Todd's paralysis. Now he says he must have incontentence or bad dreams! Really????

Can someone advise if this doctor is rational or not? If so, that's fine...I'm just curious what you all think - please??? :dontknow:

 

[knothing]

I went from having no visible seizures to grand mal seizures at age 36. My first neurologist. was a very calm person who did what he could. I had a breakthrough seizure on Keppra and he recommended me to a more specialized neurologist. At least my first neurologist had common sense enough to know when he didn't know. He let me know that not all neurologists can work effectively with epilepsy or seizure disorders.

Get another doctor immediately and document everything from when this started to the day of the appointment about your husbands seizures (not the jerk dr). This is a group effort between you, him, and the dr andyou must find someone that works with you.

 

[Nakamova]

UPDATE How disheartening..my husband called from the hospital and said the Neuro specialist who has been so nice has suddenly turned into a very rude jerk a*s and was out right mean to him - and said that he has PNES. He discontinued all meds and told him to see a psych.

I don't understand! This same doc said he had Myoclonic seizures in his sleep (I have witnessed this for several years and didn't know they were a form of seizures). He also told us that he suspected PNES due to stress, but that with PNES people don't lose consciousness and soil themselves, or have Todd's paralysis. Now he says he must have incontentence or bad dreams! Really????

Can someone advise if this doctor is rational or not? If so, that's fine...I'm just curious what you all think - please??? :dontknow:

Definitely get a second or third opinion. Regardless of whether your husband has PNES or not (which I sincerely doubt) it's a bad idea to quickly stop all meds -- any stoppage has to be gradual. Even if the neurologist was making any sense, his rudeness is a red flag for any future interactions. It's definitely strange that he's made such an about-face, but at least it makes the decision to find another doc that much easier. Find a new competent neurologist/epileptologist ASAP.