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Dr. Bob
Dr. Bob, Neurologist (MD)
Category: Neurology
Satisfied Customers: 5661
Experience:  Neurology & Int Medicine (US Trained): 20 yrs experience
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Primidone helps my seizures but I have been told they are non

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Primidone helps my seizures but I have been told they are non epileptic and if I take my primidone late the seizure will come. Also I have seizures on waking which I think are myclonic seizures what do you think
There are several categories of seizures. Have you had a work up...EEG, MRI, blood tests?
Customer: replied 2 years ago.
Yes said not epileptic but I am aware that non epileptic and disassociation do not respond to medication so why do mine albeit they don't stop them altogether. In the morning as soon as I wake I get jerks much stronger than little ones you get as you go off to sleep. I get a roller coaster feeling in my tummy which goes into a jerk/seizure I get several before they stop . I think they are myclonic jerks / seizures. My other seizures can affect my whole body and speech. Stress doesn't trigger them but sudden loud noises such as fire alarm can set one off. I don't believe I have a unconscious issue affecting them but am open minded. I used to be a counsellor before I retired . I also have a severe tremor which is how all this started I was given primidone to control the tremor which it did. However it was stopped due to high be and headache 3 days later I had massive fit / seizure loses speech well it was gobble do gook the seizures went on and off for 24 hrs my boy was 290 . I stayed in Hosp over night and was discharge then had ct Mir bloods etc. Cysts were found on my brain but they don't think they are connected to te seizures. I was started back on the primidone but slowly increased the dose and tolerate better now. I'm on 50mg 4 times a day if I take the prim late the fits start . The primidone is not working as well as it did with the seizures and tremor I think my system has got used to them now. I think the jerks I mentioned started before the tremor I thought it was part of my fibromyalgia but it has got a lot worse I get it everyday . Thank you for your help rose
Customer: replied 2 years ago.
Sorry boy = blood pressure high be= high blood pressure as well. Sorry predict text !!!
Hi Rose. Seizure disorders can vary widely in terms of presentation and frequency. Sometimes doctors disagree on whether a patient is having true seizures or not. There are other conditions that can mimic seizures or cause pseudo-seizures. Either way, it sounds as if your situation has changed lately. This can happen as we age, and things change in terms of your hormones, or weight, or sleep patterns or work patterns, or stress levels, or other medications we might begin taking. This would be a good time to see a neurologist and be re-evaluated to see if your situation has truly changed clinically or not. You might ask them to order a 48 hour video EEG which might capture one of these events and provide information with which a more accurate diagnosis can be made.
Customer: replied 2 years ago.
Hi Dr Bob I have only had these seizures for 5 months I explained how they started in earlier post. I have seen a neurologist but he is unsure the egg shows no epilepsy but have only had short test. I'm 65 so not hormone problem. What I was trying to gain from messaging you Was if they are not epileptic how come the primidone helps? And the morning ones are every day when I first wake. How can this be pseudo seizures. Regards Rose
I suspect they are true seizures and this is why primidone helps (raises the seizure threshold) and why they occur in the morning (when primidone levels are lowest). EEG is not a perfect test and can miss intermittent seizure activity. This is why a 24-hour or 48-hour video study might be helpful...either one might catch one of your morning events and document it definitively.
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Customer: replied 2 years ago.
Thank you Dr Bob I am going to pursue this more with my neurologist I truly believe I am not having pseudonym seizures. I was busy Today and suddenly started the jerk seizures again then I realised I hadn't taken my lunchtime primidone. Thank you for your help it has been very valuable to me. Kind regards Rose