Getting anti seizure medication right

Posted by poonarnar @poonarnar, May 3 4:26pm

My lovely Mum is 82 years old, she was diagnosed 1 year ago. In this time she has changed, but more so in resent months. The anti seizure medication makes her very tried she is struggling to find the right words, more so just after a seizure. Although the seizure aren't as severe she is still having them even with medication. The dose has been increased 3 times. She has lost confidence in being around people even people she knows.
The specialist said due to her age they will not operate, however she has just had her second scan, we are waiting to see the specialist for the results.
Her short term memory is on a sharp decline, I am worried. Not know what to expect.

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@poonarnar
What type seizures is your mom having and how often. What medication is she taking and what dose?
The tiredness and aphasia are likely to continue. They sometimes go away in a few week or months. Another way to hopefully decrease side effects is to start on low doses and increase slowly. Sometimes extended release drugs cause fewer side effects and in my opinion and some neurologists also believe that they are more effective.
Stanford University in Calif. did studies recommending to always use the same manufacturer whenever you have your drugs refilled.
Do not be embarrassed or ashamed that you have seizures. Continue to socialize with people. There are some people who never go out of their house because they are afraid to have anyone see them have a seizure.
It's not important that you had a seizure and what others might think, what's most important is what you think of yourself and knowing that you accept yourself and your epilepsy. Epilepsy is what it is and you can't change it so just go with it.
You said she has lost confidence in being around people even people she knows. DONT ALLOW THAT TO HAPPEN.
Stress, anxiety and depression are very common in epilepsy patients but it only makes things worse. After almost 60 years of seizures nothing bothers me and hasn't for a long time. I had a hard time the first couple of years, but that's because my seizures became so much more frequent and severe. I had a Nervous breakdown. I was having seizures on a daily basis sometimes 12 a day I had tonic clonic seizures mostly. I had a very dangerous type of Seizure called convulsive status epilepticus and had to be put into an induced coma and my first coma was eight months long. None of this is your fault and don't blame yourself. I had frequent seizures usually daily and none of the medicines did any good for 45 years. Then at age 59 they stopped. I had my last cluster 5 years ago because I was busy with my mom and forgot my medicine.
Medication adjustments can take may years.
Blessings,
Jake
PS…Hopefully Chris @santosha will come along and tell you how she decreased her seizures using alternative methods.

REPLY

Hi @poonarnar
First, great that you are in this group. Be very welcome!
I believe I can well understand your moment and emotions. I have a mother who was diagnosed with Alzheimer's a few years ago. With her sharp memory decline, she has lost a lot of confidence. As in epilepsy, there is no cure for Alzheimer's.
Coming to the subject of epilepsy, I was diagnosed with temporal lobe epilepsy with sclerosis in my hippocampus when I was 48 years old in 2019. I have tried 5 different anti-convulsive/AEDs and they have worsened my seizures and/or I could not tolerate them because of the side effects. Finally in 2021, I found an epileptologist who has made a great difference in my treatment and well-being (I have been to several neurologists and psychiatrists before this doctor). He said I have refractory epilepsy (about 1/3 of people with epilepsy have refractory epilepsy and traditional medications do not work well or are not enough). He then put me on medical cannabis (pure CBD or Epidiolex) and I felt much much better, but I still had some partial complex seizures (around 13 seizures per month).
Feeling better, I started by myself to explore alternative options based on much research and readings. I first took gluten out of my diet, as gluten causes inflammation of the gut (known today to be our second brain), reducing my seizures by 60%. My epileptologist was impressed and ordered some additional exams, discovering that I have some gluten intolerance. Last year I went to an integrative medicine neurologist to have a second opinion for my mother and he recommended an anti-inflammatory diet, exercising and yoga to my mother (she is 84 years old), besides some supplements (Vitamins, CoQ10 and others). To see if this diet was something she could follow and also to motivate her, I started the diet first, feeling the benefits of it on my epilepsy. To be brief, this diet is a gluten-free one with low carbs and sugars. Another thing that also has helped me a lot is the practice of yoga (traditional hatha yoga without those crazy postures and yoga nidra) which my epileptologist has recommended me to continue doing. I take my mother to my classes with me and she loves it. Understanding my triggers and managing them has also been very helpful. And for sure, the great support of my neuropsychologist. Thank God, the current neurologist of my mother could convince her and my father to get the support of a psychologist, who will not only give my mother emotional support but also do some mental exercises.
Who is treating your mother, a neurologist or an epileptologist? For me being treated by an epileptologist made a great difference. Would your mother accept the support of a neuropsychologist? Have your doctor told you what type of epilepsy your mother has?
There are many treatment options before surgery that I see are not explored by all doctors such as diets, supplements, trigger management (Andrews-Reiter approach), transcranial magnetic stimulation (TMS), devices such as VNS and RNS and yoga. I can well understand that such a complex surgery like a brain surgery for a person in the age of your mother will bring much stress and might be even more risky. I myself was on the way of surgery, but then thankfully I looked for a second opinion from a neurosurgeon who said that the surgery in my situation would bring more losses than benefits, with loss of memory, nomination problems, etc, as my sclerosis is on my hippocampus on the left side. I am not against surgery for epilepsy, but I believe this should be the last resource after trying many other options, besides the traditional medication.
I hope to have helped you a bit.
In case you are interested, the Epilepsy Foundation has a great website which was a school for me and where I have learned a lot about my epilepsy. I do also like to follow the newsletters of Dr. David Perlmutter, a neurologist and neuroscientist who follows more an integrative medicine approach.
My best wishes to you and your mother.
PS: Jake @jakedduck1 thank you for introducing me in this conversation.

REPLY
@jakedduck1

@poonarnar
What type seizures is your mom having and how often. What medication is she taking and what dose?
The tiredness and aphasia are likely to continue. They sometimes go away in a few week or months. Another way to hopefully decrease side effects is to start on low doses and increase slowly. Sometimes extended release drugs cause fewer side effects and in my opinion and some neurologists also believe that they are more effective.
Stanford University in Calif. did studies recommending to always use the same manufacturer whenever you have your drugs refilled.
Do not be embarrassed or ashamed that you have seizures. Continue to socialize with people. There are some people who never go out of their house because they are afraid to have anyone see them have a seizure.
It's not important that you had a seizure and what others might think, what's most important is what you think of yourself and knowing that you accept yourself and your epilepsy. Epilepsy is what it is and you can't change it so just go with it.
You said she has lost confidence in being around people even people she knows. DONT ALLOW THAT TO HAPPEN.
Stress, anxiety and depression are very common in epilepsy patients but it only makes things worse. After almost 60 years of seizures nothing bothers me and hasn't for a long time. I had a hard time the first couple of years, but that's because my seizures became so much more frequent and severe. I had a Nervous breakdown. I was having seizures on a daily basis sometimes 12 a day I had tonic clonic seizures mostly. I had a very dangerous type of Seizure called convulsive status epilepticus and had to be put into an induced coma and my first coma was eight months long. None of this is your fault and don't blame yourself. I had frequent seizures usually daily and none of the medicines did any good for 45 years. Then at age 59 they stopped. I had my last cluster 5 years ago because I was busy with my mom and forgot my medicine.
Medication adjustments can take may years.
Blessings,
Jake
PS…Hopefully Chris @santosha will come along and tell you how she decreased her seizures using alternative methods.

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There are so many types of seizures, so best to find neurologist with experience and all the new tools

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